Marcus Samo, Assistant Secretary in the Federated States of Micronesia (FSM) Department of Health Services, is concerned that the country has been unable to reduce the prevalence of Hansen’s disease. Credit: Stella Paul/IPS

By Stella Paul
POHNPEI , Apr 8 2019 (IPS)

During his 22-year career in the health sector, Marcus Samo has seen the Federated States of Micronesia (FSM) suffer from an increased burden of disease while at the same time the resources to address them have either remained the same or decreased.
Samo is the Assistant Secretary in the country’s Department of Health Services, a post he has held for a decade. He has seen the rapid growth of both noncommunicable diseases (diabetes and heart ailments) and communicable diseases (tuberculosis and leprosy).

Micronesia, the Marshall Islands and Kiribati have among the highest rates of leprosy, also known as Hansen’s disease, in the world. But according to the World Health Organisation (WHO), Micronesia has the highest prevalence of Hansen’s disease in the Pacific.

And Samo considers the disease his country’s biggest health concern.
“We don’t seem to be reducing leprosy the way we should, so it is a big concern for us. We appreciate the way we are getting support, such as drugs,” Samo tells IPS.
Novartis, through the WHO, currently provides multidrug therapy or MDT free across the globe.
And this March, Samo met with a team from the Sasakawa Health Foundation/Nippon Foundation, led by the foundation’s CEO Takahiro Nanri. The team was in Pohnpei, the Micronesian capital, to understand the reasons for the high prevalence of Hansen’s disease in the country and to assess the national leprosy programme. The foundation’s team included Dr. Arturo Cunanan, a world expert on leprosy, who currently heads up the Culion Sanitarium and General Hospital in the Philippines.

In addition to philanthropic assistance, Micronesia, like the Marshall Islands, is dependent on financial assistance from the United States. This is provided under the Compact of Free Association Agreement, which, according to the U.S. Department of the Interior means “the U.S. provides financial assistance, defends the FSM’s territorial integrity, and provides uninhibited travel for FSM citizens to the U.S.” For the 2019 financial year, 65 million dollars in Compact Funding was allocated to the atoll nation.

Samo admits that ensuring healthcare to the approximate 105,000 people, who are scattered on 65 of the nation’s 607 islands, is a balancing act. Oftentimes his staff use the tuberculosis (TB) budget to provide care for Hansen’s disease patients. Also, with just one newspaper and one radio station in the country, his department has few tools of mass communication and depends heavily on social media to raise public awareness about leprosy.

The offices of the Department of Health Services in Pohnpei, Micronesia’s capital. Ensuring healthcare to the approximate 105,000 people, who are scattered on 65 of the nation’s 607 islands is an ongoing challenge. Credit: Stella Paul/IPS

Excerpts of the interview follow:
Inter Press Service (IPS): Other than the supply of drugs, in what other areas does FSM need the support of the international community?

Marcus Samo (MS): Beside drugs, one area where we need support is definitely transportation. To get to the islands, to give drugs to the patients is very difficult for us. So, transportation is one [need] and training is another.

IPS: What kind of training do you need?

MS: Training for physicians and clinicians on how to administer the drugs, how to deal with the complications of leprosy and extreme cases. Recently, one of our staff [received] some training in India and that is very useful.

IPS: Have you ever thought of building a treatment facility for those who might have serious cases of advanced leprosy?

MS: We haven’t really thought of it, but I think that is certainly something we will consider down the line. I am not sure if we have such extreme cases here, but only time will tell if we must do some serious thinking about it.

IPS: Is leprosy is a priority? Do you allocate enough fund for fighting the disease?

MS: As you know, Micronesia gets most of its resources from the US government through the Compact Fund. Most of our budget allocations come from there. But, just recently, our department has also started receiving some additional money which is raised by our own national government locally through revenue collections and some other smaller funds that we get from other governments. We call it the Legal Fund. We are distributing some of this money to our state health departments to provide care for all the diseases which are endemic here such as diabetes, TB and leprosy. That’s why I say leprosy is a priority for us.

IPS: So, for the annual budget of your department, the national government gives you money both from the Compact Fund and from various other funds?

MS: Yes

IPS: But your National Leprosy Programme (NLP) still doesn’t have any fund of its own and depends on TB programme’s budget. Is it correct?

MS: We are aware of it. But TB and Leprosy are now combined as a single, integrated service. Sometimes they do internal adjustments. But, as I said, we are looking forward to more external financial support. If we can get it, we can provide funding separately to the NLP.

IPS: What is the amount you allocate to states? Is this enough?

MS: I can’t give you a number yet, but it is not adequate. But, compared to what we had five years ago, it has increased a little and we just need to maintain it. Of course we are also working with our funders like [United States] on this.

IPS: How important is the role of media in eliminating leprosy and how do you collaborate with the media?

MS: The role of the media is very important especially in removing the stigma that is attached to leprosy. We don’t have a television channel here. We have a radio station and a newspaper who decide on their own content. We may consider [teaming] up with them to produce some content focused on leprosy like a panel discussion or a special interview with a visiting expert. But currently we are using media that we produce such as posters, brochures and leaflets.

IPS: Have you ever met a leprosy patient yourself?

MS: Only when I was a kid. Since then, I have not.

Excerpt:

Dexter, a 25-year-old fisherman from Pohnpei in the Federated States of Micronesia, received treatment for Hansen’s disease, also known as leprosy, for over a year. He has been cured of the disease. Credit: Stella Paul/IPS

By Stella Paul
POHNPEI, Apr 8 2019 (IPS)

It’s a good day for Dexter, a 25-year-old fisherman from Pohnpei in the Federated States of Micronesia. He’s just been told that he is cured of leprosy.
“I have been sitting at home for nearly a year now,” Dexter, who doesn’t want to reveal his last name, tells IPS. “But now I can finally return to my job,” he says with a smile.

However, not every patient in Pohnpei State may be as fortunate as Dexter. The region is grappling with a shortage of leprosy drugs. Multidrug therapy (MDT) is provided for free by Novartis, through the World Health Organisation (WHO) and distributed across the globe. But Pohnpei has to send through an application for new stock to the national government.

“We have not received any fresh supply of drugs this year, so we are giving what we have in our stock although they are now expired,” reveals Dr. Elizabeth Keller. She is the acting chief of Pohnpei State’s Department of Health Services and also heads the region’s leprosy programme.

Pohnpei State has the largest number of leprosy cases in the country—nearly 100 new cases are reported here every year. And Micronesia still remains one of three Pacific island nations, along with the Marshall Islands and Kiribati, that is yet to eliminate leprosy or Hansen’s disease. In fact, according to the WHO, Micronesia has the highest prevalence of Hansen’s disease in the entire Pacific.

But the news of the shortage in Pohnpei State appears to take many by surprise, including Mayleen Ekiek, who heads the country’s National Leprosy Programme (NLP).

“I am surprised to hear this. This should not happen. I don’t know why they have not received the fresh stock because the supply is made once the requisition is submitted to the government,” she comments.

But it is easy to see how Ekiek could be unaware of the situation.

Providing healthcare to the country’s estimated 105,000 people, who are scattered over 65 of the country’s 607 islands, is complicated. While the Micronesia’s four states receive their funding directly from the national government, they work independently and usually only communicate directly with the federal government.

“The Department of Health Services in each state provides medical and public health services through a hospital, community health centres and dispensaries. Each state system is autonomous,” states the WHO.
As state health departments are not mandated to report to the NLP, Ekiek is sometimes caught unaware by developments, such as the current drug shortage.

However, Keller says that her department has already asked for the fresh supply and hopes it would come soon. Meanwhile, she assures that the medicine will not cause any adverse effect on the patients’ health. “These may not work as effectively as fresh drugs, but they will not harm,” she says.

Dr Arturo Cunanan with a patient at a leprosy clinic in the Federated States of Micronesia. Cunanan, a world expert on Hansen’s disease, says that a review of Micronesia’s national leprosy programme is overdue. Credit: Stella Paul/IPS

And while there is also a mechanism to bring the various states in Micronesia together to collaborate their leprosy services, Ekiek says that without funding it would be hard to do.

“I also lead the national programme on [tuberculosis] TB and I often piggyback on the TB budget to visit our leprosy programmes in the state. But I cannot organise a meeting of the state leprosy workers because it would require about 40,000 dollars-which is too big of an amount to be extracted from another programme budget,” Ekiek explains.

Budgetary allocations aside, Micronesia also has the challenge of a lack of credible data. Clear, defined parameters of data can help paint an accurate picture of leprosy in the country, and also provide information about the exact number of new cases.

In addition, a database of all the people affected by leprosy, and those who are undergoing treatment, can be created to make the information easily accessible.

Because without credible data, there is currently no uniformity in the statistics provided by the national and the state programmes.
“We received 89 new cases in 2018. This year, between January and March, we have seen 35 news cases,” Keller informs.
But according to Ekiek, there were probably just 75 new cases in 2018.
“Honestly, we cannot be sure because we don’t have a clear database yet. We don’t have a trained data analyst or staff who is skilled to compile and visualise statistics,” she admits.

While the confusion among the different government agencies continues, some experts feel that it is because of a lack of coordination and that a review of the national leprosy programme is overdue.

“The national leprosy programme has not been reviewed for a long time, so we don’t know what is working and what is not. Maybe they need a complete overhaul of the system or maybe they just need some training in data, records and office management,” says Dr. Arturo Cunanan, a world leprosy expert and chief of Cullion Sanitarium and General Hospital in Philippines. Cunanan, who is also recipient of the Gandhi Peace Prize for his work with leprosy, was visiting Micronesia with the Sasakawa Health Foundation/Nippon Foundation to review the current progress in eliminating leprosy.

“But without that review of the current programme, a true need assessment is not practically possible,” Cunanan, who has trained several health department staff across Micronesia region, including Ekiek, says.

* Additional reporting and writing by Nalisha Adams in Johannesburg

Jack Niedenthal, the secretary of Health and Human Development in the Republic of Marshall Islands stands in front of the poster that records the dark past of the Pacific island nation and the need for good healthcare. Credit: Stella Paul/IPS

By Stella Paul
MAJURO, Apr 5 2019 (IPS)

In Jack Niedenthal’s office in Majuro, there is an ominous reminder of the dark history of the Marshall Islands—once the site for dozens of nuclear tests conducted by the United States between 1946 and 1962. But it also provides a strong message about the future of island nation.
“Given what the Marshall Islands has done for humankind, we deserve the best healthcare in the world,” reads a poster on his wall.

“What you see here is what I strongly believe,” says Niedenthal, the secretary of Health and Human Development here.

In fact, today the Pacific island nation’s main national income, aside from the sale of fishing rights to foreign firms, is the money the U.S. pays as compensation for conducting the nuclear tests through the Compact Trust Fund.

Many of those who live on the islands where the nuclear tests where conducted suffer from cancer. These cases are in addition to the high occurrences of tuberculosis (TB), diabetes and leprosy that the health authorities here have to address.

Niedenthal tells IPS that although the latter three diseases are not directly connected to the nuclear tests or radiation, the nation’s citizens, some 53,000, must be able to realise their right to good health and have the opportunity to live long lives. However, the resources to ensure that good healthcare is available to all remains limited.

So, Niedenthal is adopting practical measures by integrating services to provide care for people suffering from two of the country’s most endemic diseases, TB and leprosy. From the screening of citizens for potential new cases, to consultations with doctors and nurses, the integration is supposed to mean better and more accessible services. “It’s a small place. If tomorrow there is an epidemic, it will affect everyone. So, [an integrated] programme will help us be better prepared,” Niedenthal says.

The integration is a natural step in strengthening the healthcare sector here, but it should also include the sustained availability of services, say health experts. Without ensuring the latter, integration will neither result in significant improvement nor will it help eliminate the diseases, especially leprosy, says Dr. Arturo Cunanan, the head of the Culion Sanitarium and General Hospital in the Philippines and a world leprosy expert.

“Ideally, this is how it should be. Care for leprosy should be integrated with the general healthcare services. It is the only way to ensure the care is available at every level of the healthcare sector—right from the village to the city.
“If this can be done, a person who is affected, doesn’t have to travel far and wide to a specialised clinic or be dependent on a niche expert because every healthcare centre will have a person with some level of leprosy expertise. However, the two much go hand in hand because without sustained services and availability of that expertise, the integration cannot achieve anything,” Cunanan tells IPS.

Jefferson Barton, the Deputy Secretary of the Republic of Marshall Islands, says that the government considers leprosy elimination a high priority. Credit: Stella Paul/IPS

According to Cunanan, leprosy, is a “victim of its own success” meaning that due to the decreased number of cases, it is not a high priority with the governments anymore, even in countries were it is not yet eliminated.

The low priority is reflected in the low resource allocation, inefficiency in the management of the programme besides lack of facilities and skilled staff.

But while supplying integrated healthcare services promises to ease the management of the leprosy programme at an administrative level, it also can create scarcity of staff with specialised skills to treat leprosy. Sustainability, therefore, must be the key, Cunanan explains.

But Jefferson Barton, Deputy Chief Secretary of Republic of Marshall Islands (RMI), says that the government considers leprosy elimination a high priority.
“Health and education are our top priorities and even in health, we are focusing on educating the Marshallese people, especially the children, about the biggest health issues,” Barton tells IPS.

He, however, also assures that the country is willing to collaborate more with international experts, and donors such as the Sasakawa Health Foundation and its parent body the Nippon Foundation, to ensure better healthcare in RMI.
Globally, the treatment of leprosy is free. Manufactured and donated by Novartis, multidrug therapy or MDT, is distributed through the World Health Organisation.

But access to other services such as information about the disease, and credible, accurate and cleaned data on leprosy and TB is less than adequate—a fact that Niedenthal admits. He, however, believes that with support from the international community the country can overcome these challenges and ensure sustained healthcare for all.

“A lot of Marshallese travel and work abroad. If they carry a disease, it will affect people there. So, when you give us money to control the disease here, you are investing in your own well-being,” Niedenthal says.

Dr Ken Jetton (left) and Dr Arturo Cunanan (centre) with a patient who has been cured of leprosy in the Majuro leprosy clinic in the capital of the Marshall Islands. The patient is now seeking further help due to post-treatment complexities. Credit: Stella Paul/IPS

By Stella Paul
MAJURO, Apr 4 2019 (IPS)

It’s a Friday morning and Dr. Ken Jetton, the only doctor who treats leprosy in Majuro, the capital of the Marshall Islands, is seeing a patient recently cured of the disease.
David, 32, has received multidrug therapy (MDT) treatment for a year already. But he is back in the doctor’s office because of a reversal reaction that has occurred.

David, who asks to be referred to only by his first name to protect his privacy, has a stiffness in his fingers. A carpenter by profession, the stiffness is causing David greater financial loss than leprosy did as he cannot hold the tools of his trade in his hand any longer.

“This is the kind of patient I typically attend to…people who have been cured of leprosy, but have physical disability due to reversal reaction to the treatment,” Jetton tells IPS.

According to authors Francisco Vega-Lopez and Sara Ritchie in ‘Manson’s Tropical Infectious Diseases’, reversal reaction is one of two distinct reactions that occur after becoming infected by the bacterium that causes Hansen’s disease, also known as leprosy.

“Reversal reactions may cause acute inflammation causing rapid loss of nerve function and require prompt initiation of treatment with oral steroids,” the authors note. They also note that this reaction can occur before, during or after treatment.

Dr. Arturo Cunanan, a world expert on Hansen’s disease, tells IPS that almost everyone shows some symptom of reversal reaction. However, the degree to which it presents varies from person to person. Those who are diagnosed and treated late have more visible signs of disability than those who were diagnosed and began treatment early.

Resource crunch limiting services
But Jetton tells IPS that he is restricted by a lack of resources and unable to reach out to other patients who, like David, need his services as a doctor.

“It is at this stage that they need me even more because they are puzzled by this [disability] and they also suffer financially. But I cannot see all of them, especially those living in the outer islands,” Jetton explains.
The physician is based in Majuro, the capital of the island nation. But Marshall Islands has 28 other atolls, where there are many active cases of leprosy reported.

But while some of these islands are a short boat ride away, the others are not so easily reachable.
“There is a car for our office use but I do not get an allowance to buy petrol for the car. Who will pay for the boat and the visits to the outer islands?” Jetton asks.

The resource crunch seems a direct result of the decreasing budgetary allocation for health in the country’s five-year funding plans. According to government records, in 2016 the Department of Health was allocated just over 25,000 dollars for its budget. However, this year the amount was 23,000 dollars.

Even for a tiny nation like the Marshall Islands, which has a population of just over 53,000, the health budget is considered small.
There are reportedly 65 healthcare centres across the various atolls. And according to Jetton there are only a handful of staff managing these.

While MDT is provided free by Novartis, through the World Health Organisation (WHO), there are no funds to staff a leprosy centre outside of Majuro. And the country records some 75 new cases of Hansen’s disease each year.

Dr. Ken Jetton, is the only doctor who treats leprosy in Majuro, the capital of the Marshall Islands. Credit: Stella Paul/IPS

New leadership, new approach
The constraints of working with an inadequate budget goes beyond fuel allowances, Jack Niedenthal, the Secretary of Health and Human Services in the Department of Health, tells IPS.
The biggest challenges of the department, says Niedenthal who took over the post early this year, are the lack of skills, capacity and infrastructure required to fight endemic diseases in the island nation.

“All the staff here are underpaid and overworked. They need skill-building training, and we need infrastructure, including new facilities to detect, diagnose and treat,” Niedenthal is heard saying during a meeting with a team from the Sasakawa Health Foundation led by its CEO, Takahiro Nanri.

There are several areas where the staff would benefit from further training. Data and record keeping is one of them, points out the secretary before making an appeal to international experts.
“Instead of inviting us abroad, visit us here and train our staff right here,” says Niedenthal. He was formerly the Secretary General of the country’s Red Cross Society and has a strong human rights approach to health.

Addressing the right audience
Niedenthal’s appeal could potentially bring some positive changes as Yohei Sasakawa, WHO Goodwill Ambassador for Leprosy Elimination, and chair of the Nippon Foundation, the parent body to the Sasakawa Health Foundation, is expected to visit Marshall Islands later this month.

Sasakawa, who is also Japan’s Ambassador for the Human Rights of People Affected by leprosy, and recent recipient of the Gandhi Peace Prize, is keen to understand the situation of combatting leprosy in the country and wants to extend his support to both those providing healthcare as well as those affected by leprosy here.

Jetton is positive that with the help of the foundation they will be able to improve their services to leprosy patients.
In the meantime he prescribes prednisolone, a drug generally used to treat reversal reactions, to David.

By Stella Paul
POHNPEI , Apr 3 2019 (IPS)

Elizabeth Keller is one of the most senior health officials in the Federated States of Micronesia (FSM).
She is the current acting chief of Public Health and also the head of the leprosy programme in the island nation’s capital of Pohnpei.
While Pohnpei has the largest number of leprosy cases in the country—nearly 100 new cases are reported here every year—Keller says that more new cases doesn’t necessarily present an alarming picture. She says that this should be viewed instead as a positive sign that the government’s activities are effective as more people are coming forward to be diagnosed than ever before.

During a recent visit of the Sasakawa Health Foundation/Nippon Foundation team to Micronesia’s Health Ministry, Keller talks about how her department is trying to protect the children of Pohnpei from leprosy, otherwise known as Hansen’s disease. She also talks of the unique perspective and strength that a female leader like her can bring to public health.

By Stella Paul
PHOHNPEI, Apr 2 2019 (IPS)

Mayleen Ekiek has been working with the Department of Health in the Federated States of Micronesia (FSM) for 12 years now. She is the head of the National Leprosy Programme in the Pacific island nation, which still remains one of three, along with the Marshall Islands and Kiribati, that is yet to eliminate leprosy.

Ekiek is responsible for ensuring the smooth running of the leprosy programme, as well as its success.

However, as Ekiek reveals in this interview, the absence of funding at a national level is one of the many roadblocks that she faces. In what seems to be a growing trend across the Micronesia region, FSM also has combined diseases to provide an integrated healthcare service. In this nation the treatment of both tuberculosis and leprosy is combined. However, while there are regular budgetary allocations for TB, there are none for leprosy, otherwise known as Hansen’s disease.

Despite the lack of funding, Ekiek has managed to keep the programme alive because of her sheer grit and passion for seeing a Leprosy-free Micronesia.

During a recent visit of the Sasakawa Health Foundation/Nippon Foundation team to Micronesia’s Health Ministry, Ekiek was on sick leave thanks to a fractured her leg. But to everyone’s surprise, Ekiek attended the meeting as she viewed it as a vital opportunity to seek the resources she needs for the leprosy programme. In the following interview, Ekiek talks about the financial and technical support needed achieve the programme’s goal of eliminating leprosy.

Meretha Pierson, a nurse in the leprosy clinic of Majuro, Marshall Islands, shows the medication to cure leprosy that are provided for free. Credit: Stella Paul/IPS

By Stella Paul
MAJURO, Mar 28 2019 (IPS)

Meretha Pierson has been a nurse for the past seven years, working in the government-run leprosy clinic in Majuro, the capital of the Marshall Islands. Her patients come in all ages, from different economic backgrounds and different professions. But, aside from their diagnosis, they all have something else in common: everyone wants to keep their illness a secret.

“Everyone requests me not to tell their neighbours. But women who are young, request me to not inform even their spouses. ‘Please don’t tell my husband,’ they say.  Sometimes, such a request is really hard to keep,” Pierson tells IPS.

Unwanted labels

There is a reason why Pierson, one of the handful of trained health workers who can detect a case of leprosy, also known as Hansen’s disease, can’t always promise full confidentiality to her patients.

Marshall Islands is believed to have 50 to 80 new cases of leprosy every year – a number that is very big for a population of only 60,000.

According to the World Health Organization (WHO), if more than 1 in every 10,000 people are affected by leprosy, then it should be considered as a disease that has not been eliminated.

Marshall Islands, as classified by the WHO, is therefore far from eliminating the disease.

But it is a classification that the government is eager to get rid of. In mid-2018, the government and the country’s Ministry of Health, ran a three-month long health screening campaign where over 27,000 citizens were tested for both leprosy and tuberculosis so that every affected person could receive treatment.

Concrete details on the number of leprosy cases are yet to be made public, but health workers like Pierson have already been instructed to keep a close eye on the patients who do not return to report on their health and who stop treatment in the middle of the course. And this is why it makes it really difficult to keep the promise of not alerting anyone to their illness as health workers are often compelled to seek out the patients.

Tracking these patients down and convincing them to restart their medication is both a necessity and a requirement that forms part of the government’s new campaign to curb the disease.

But as they do so, the requests for confidentiality becomes more frequent.

“They do not want us to go to their houses. So, we make phone calls, call them to a place outside of their homes and their neighbourhood and that’s where we do our counselling and advise them to return to the clinic for a check-up and continue the treatment. But it’s hard,” Pierson tells IPS.

The leprosy hotspots in the Marshall Islands. Credit: Stella Paul/IPS

Discrimination towards the caregiver

However, it is not only patients who are stigmatised on this island nation. Health workers themselves often bear the brunt themselves in a society where over 80 percent of the population are of Christian faith. Pierson, a Mormon, says that she has often faced discrimination from her neighbours and relatives who have suspected her of having leprosy.

“They think because I work in a leprosy clinic, I am carrying the germ or the disease myself. Some even ask why I do not give up this job. I have to always tell them that I am a nurse and I do not have leprosy myself. Even in the church, I get those stares,” she says. Fortunately, her husband is supportive and has never asked her to leave her job.

The hotspots

There are around 30 atolls that comprise the Marshall Islands and about a quarter of them are known as the hotspots of leprosy, according to Dr. Ken Jetton, the main physician at the country’s Department of Public Health.

Jetton officially diagnoses and confirms leprosy cases after Pierson detects a possible case and refers the patient to him.

He tells IPS that few of these ‘hotspots’ include the atolls of Kwajalein, Ailinglaplap, Mili, Arno, Wotje and Ebon. During the recent mass health screening, about 47 new cases were reported from these places.

The data sheet is yet to be complied, but once this is done, a proper plan will be drawn up to treat each patient until they are cured, Jetton reveals. The medication, Multi Drug Therapy (MDT), an oral medicine, is given free of charge in 6 packs for children and 12 packs for adults.

Understanding the gaps in country’s leprosy elimination campaign is one of the reasons why a team from the Sasakawa Health Foundation, led but its executive director Takahiro Nanri, as well as the world’s leading expert on leprosy, Dr. Arturo Cunanan, are travelling around the Marshall Islands and the Micronesia region. They have been meeting with senior government and health officials and leprosy experts and have visited clinics in Marshall Islands and the Federated State of Micronesia. Yohei Sasakawa, chair of the Nippon Foundation, the parent body for SMHF, is the WHO Goodwill Ambassador for Leprosy Elimination, and Japan’s Ambassador for the Human Rights of People Affected by leprosy. He will be touring the region in April to also assess the progress governments have made.

However, Pierson says that despite the screening and follow up activities, social stigma, especially towards the female leprosy patients might take longer than expected to fade away. This is because the island nation is still largely ignorant of the fact that leprosy as a curable disease, she explains.

Patience, therefore, is the key, she reminds. “We must be patient and  also have empathy for those who hide their diseases from others. They are vulnerable and scared of losing their dignity and we need to understand this,” says the nurse.

Dr. Arturo Cunanan is the Medical Centre Chief of Culion Sanitarium and General Hospital in the Philippines and one of the most experienced experts on Hansen’s disease, also known as leprosy, in the world today. Credit: Stella Paul/IPS

By Stella Paul
MAJURO, Mar 25 2019 (IPS)

His multiple awards and degrees aside, Dr. Arturo Cunanan is known as a people’s doctor; one who has profound belief in the human rights of every person affected by Hansen’s disease, commonly known as leprosy.
Considered one of the most experienced experts on the disease in the world today, Cunanan is currently the Medical Centre Chief of Culion Sanitarium and General Hospital in the Philippines. He is the first director of the hospital who is a direct descendant of people affected by Hansen’s disease who were isolated and segregated in Culion. The island of Culion, where the hospital is based, was originally set up as a leper colony at the turn of the 20th century, with the hospital been founded to solely treat patients with Hansen’s disease. However, from 1994, the Culion Sanitarium and General Hospital began general hospital services.

Currently in the Marshall Islands, in the northern Pacific, to review the national leprosy programme for the atoll nation, Cunanan tells IPS about the importance of viewing leprosy as an ordinary disease and how the failure to do so leads to continuous stigma.

“Integration of leprosy in the mainstream is important and it is also important to see that leprosy is treated as an ordinary disease and not as a special disease. Leprosy then becomes an ordinary disease. But if you treat leprosy as a special disease, then those with leprosy can become more stigmatised. People who have leprosy, can live a normal life. This is the message,” he tells IPS.

Recipient of several national and international awards, including the 2015 Gandhi Peace Prize, Cunanan earned his Masters in Public Health and Hospital Administration at the University of the Philippines and a Doctorate (PhD) in Health Systems and Policy at the National Institute of Health, University of Leeds as an International Ford Foundation Scholar.

He is also a consultant with the World Health Organisation and has provided his leadership in reviewing the National Leprosy programmes across the Micronesia region.

Cunanan is also the implementer of Sasakawa Health Foundation/Nippon Foundation’s projects in Culion and the Philippines that are related to leprosy and human rights, preservation of leprosy history, and various socio-economic projects that improve quality of life of people affected by leprosy and their families.
Excerpts of the interview follow:

Inter Press Service (IPS): Can you elaborate on how treating leprosy as a special disease leads to more stigmatisation and violates the rights of a person affected by it?

Arturo Cunanan (AC): Leprosy is one of the oldest known diseases in human history. It’s a biblical disease; there are instances of Jesus meeting men suffering from leprosy—men who were described as unclean and who became clean after Jesus touched them. The fear of leprosy and the social reaction to leprosy—both are are old.

In modern times, we have seen governments bring in laws that were built on the rule of detection and segregation. All of this only alienated a leprosy-affected person further.

But the truth of the day is: leprosy is curable. A person with leprosy can live a normal life. He can get treated—free of charge—for his disease. But, if we continue to treat leprosy as a special, extraordinary disease, it will perpetuate the alienation and it will also perpetuate the fear and stigma.

IPS: What happens when a leprosy-affected person faces stigma?

AC: First, they are socially, economically, and culturally isolated. People in their village, neighbourhood, society stop making contact with them and their families. But it ultimately violates their rights to respect and dignity.
Let me give you an example. In Culion, we get visitors. Some of them ask me if they can visit some leprosy-affected people. I tell them, look around you—everyone here has been affected by leprosy. But they look around and they do not want to believe what they see: normal people, with a normal physical appearance.

What these visitors are expecting to see is a person who has severe physical deformity, because in their minds, they [the visitors] have the image of a leprosy-affected person like that—a demonised image.
So, I tell them, these are people, no matter how severely they are affected by the disease—they are people like you and me, they have a right to a life of respect and dignity. How would you feel if someone looked at you in shock and fear, maybe disgust and gasp? This is what stigma and isolation leads to—the total denial of dignity.

IPS: How does this affect the treatment of leprosy?

AC: There are several reasons why a person affected by leprosy doesn’t seek treatment and social stigma is one of them. The person is afraid that once he has been confirmed as a person who has leprosy, the reaction of society will be severe towards him and his family.

They will not be included in any social or cultural events, nobody will visit them at their homes, and nobody will continue social relations with them. This will affect them economically also, they will not be employed like before. All of this discourages the person from going to the health centre and reporting his condition as he wants to avoid this social stigma.

IPS: You often say that Leprosy treatment needs to be integrated into the general health service system. What does that mean?

AC: This means that leprosy treatment can be made available at the local level. At every health centre, someone should be skilled enough to at least raise suspicion—if not fully detect—when he or she notices a possible case of leprosy.

For example, a person visits the health centre with a visible patch on his or her body which maybe numb. If a staff member at the health center can suspect that this could be a leprosy case, he could share this with the person and refer this person to a more skilled health worker to another clinic that specialises on leprosy. This way, a detection, confirmation and treatment could then begin.
But if the staff member is not capable of this, then he could simply give him an ointment for a skin rash and send him back home.

Especially in the islands, where people live a simple life, in close contact with the sun, sand and salt water, small skin marks like a patch would not usually make a person suspicious of his body or make him go to a leprosy clinic straightaway. But if even one person at the health centre can think that this might be leprosy, it could be a big help.

The third point is, even when the treatment begins, the person affected by leprosy may not take his medicines regularly or may not monitor his health conditions such as a sign of reactions etc on a regular basic and this could affect him adversely. But, if the staff at his local health center can communicate with him that he must report back if there is a reaction, he will do so.
So, it is key to have leprosy treatment integrated in the general health service, so there are skilled workers at every level of the health system.

Excerpt:

By Stella Paul
MANILA, Mar 5 2019 (IPS)

As the Executive Director of Sasakawa Memorial Health Foundation (SMHF), Takahiro Nanri has been working on the issue of leprosy since 2014. Over the past few years, he has traveled across the world visiting the large number of leprosy projects that SMHF has been supporting and meeting dozens of organisations led by leprosy-affected people.
In the past few decades the global fight against leprosy intensified which brought down the number of active cases drastically. As a result, leprosy is now officially eliminated in most countries, but its is still not completely eradicated. So, the word is now at ‘last mile’ to a leprosy-free world which is often described as the hardest part of the journey.

The reasons are many: hidden cases that are unreported and untreated and remain at risk of transmitting to others, insufficient budget allocated by the governments as they feel leprosy no longer needs to be a priority, lack of coordination among organisations working on leprosy and so on.

In this video, Nanri shares his views on how can this last mile journey can be overcome.
There is an urgent need for a coordinated effort to acknowledge that leprosy is still a reality, he says, before promising that SMHF and its parent organisation the Nippon Foundation, are ready to play the role of catalyst to this new, heightened level of co-ordination.

Alice Cruz is the United Nations Special Rapporteur on the elimination of discrimination against persons affected by leprosy and their family members, says divorce on the grounds of leprosy, allowed by laws or not, is a prevailing reality. Credit: U.N. Photo / Jean-Marc Ferré

By Stella Paul
MANILA, Mar 5 2019 (IPS)

Discrimination against women who are affected by leprosy or Hansen’s Disease is a harsh reality, says Alice Cruz is the United Nations Special Rapporteur on the elimination of discrimination against persons affected by leprosy and their family members.

“Divorce on the grounds of leprosy, allowed by laws or not, is a prevailing reality. In settings where women are not economically independent, it can lead to the feminisation of poverty, throwing too many women affected by leprosy into begging or even prostituting,” says Cruz, who was speaking via audio link at Regional Assembly of Organisations of People Affected by Leprosy in Asia that was held in Manila, Philippines. The Sasakawa Memorial  Health Foundation/the Nippon Foundation (TNF) which supports leprosy projects across the world sponsored the meeting.

A professor at the Law School of University Andina Simon Boliver in Ecuador, Cruz has extensive knowledge of the social stigma and discrimination faced by the people who are affected by leprosy which also amount to the violation of their human rights.

In an interview to IPS, Cruz speaks of the layers and levels of stigma that men, women and children of leprosy-affected people face and how the U.N. has been trying to end it. Finally, she lists the simple ways that every ordinary person can contribute to end the stigma that people living with leprosy face and how to help them become integral to society. Excerpts of the interview follow:

Inter Press Service (IPS): What is the link between human rights violation and the leprosy-affected people? 

Alice Cruz (AC): Throughout history leprosy has become much more than a disease: it became a label, mainly used to exclude. Leprosy came to embody what was socially prescribed as shameful and disrupting. It became a symbol, a powerful metaphor, for everything that should be kept apart, whether it was attributed to punishment for sinful conduct, unregulated behaviour, past offences and socially constructed ideas of racial inferiority, among others harmful myths and stereotypes, which led to massive human rights violations of persons affected by leprosy, but also their family members.

IPS: Can you describe some of the ways the rights of leprosy affected people are violated?

AC: Women, men and children affected by leprosy were, and continue to be in many contexts, denied not only their dignity, but also an acknowledgement of their humanity. It is not a coincidence that it is commonly said that persons affected by leprosy experience a civil death.

They have been consistently subjected to: stigmatising language; segregation; separation from their families and within the household; separation from their children; denial of care; denial of the means of subsistence; denial of a place to live; denial of education; denial of the right to own property; impediments to marry; impediments to have children; restrictions on their freedom of movement; denial of their right to participate in community, public and political life; physical and psychological abuse and violence; compulsory internment; forced sterilisation; institutionalised silencing and invisibility.
There are still more than 50 countries in the world with discriminatory laws against persons affected by leprosy in force.

IPS: What is the UN doing to prevent and end these violations?

AC: In 2010, the General Assembly, in a landmark move, adopted resolution 65/215 and took note of the principles and guidelines on the elimination of discrimination against persons affected by leprosy and their family members. In so doing, it established leprosy as a human rights issue and stressed that persons affected by leprosy and their family members should be treated as individuals with dignity and entitled to all human rights and fundamental freedoms under customary international law, the relevant conventions and national constitutions and laws. In June 2017, the Council adopted resolution 35/9, establishing the mandate of the Special Rapporteur on the elimination of discrimination against persons affected by leprosy and their family members. It called on States and all relevant stakeholders to cooperate with the Special Rapporteur in the discharge of the mandate. I assumed this role on Nov. 1, 2017.

IPS: How far have we come in achieving the 2020 target leprosy eradication?

AC: I am afraid we are very far from such a scenario. By the one hand, eradication of leprosy is not on the horizon given the lack of a vaccine. By the other hand, official reports of around 150 countries to the [World Health Organisation] WHO in 2016 registered more than new 210 000 cases of leprosy, with high incidence among children, which means ongoing transmission.

IPS: How can every ordinary person contribute to eradication of leprosy and ending stigma towards leprosy affected people? 

AC: Acknowledging that persons affected by leprosy are the same as everyone else and fighting harmful stereotypes in daily life. Remembering that anyone, including you and me, can come to suffer from any disease or disability and that diversity and dignity in diversity is what makes us humans.

Culion Sanitarium and General Hospital Medical Director Dr. Arturo Cunanan urged delegates to the Regional Assembly of Organisations of People Affected by Leprosy in Asia to "put our partnership beyond these walls" and act on the strategies discussed at the three-day conference. Credit: Ben Kritz/IPS

By Ben Kritz
MANILA, Mar 5 2019 (IPS)

Organisations of people affected by leprosy in Asia have agreed to form a regional-level secretariat to support national advocacies and represent their collective agenda at a world conference to be held later this year.

This was the most significant development to emerge from the Regional Assembly of Organisations of People Affected by Leprosy in Asia held in Manila from Mar. 3 to 5. The Coalition of Leprosy Advocates of the Philippines (CLAP) was selected by the delegates to serve as the first regional secretariat.

Sasakawa Memorial Health Foundation (SMHF) Executive Director Dr. Takahiro Nanri requested that the first major initiative of the secretariat be the formulation by June of a “road map” encompassing the Assembly’s consensus agenda, which would then be used by the SMHF and it’s parent body the Nippon Foundation (TNF) to help develop the programme for the world leprosy conference to be held in September.

SMHF and TNF convened the regional assembly in partnership with CLAP and the Culion Sanitarium and General Hospital (CSGH).

From theory to practise

CSGH chief Dr. Arturo C. Cunanan told the delegates assembled for the final day of the conference that, “putting our partnerships beyond these walls, putting it into action, is the big challenge” faced by the national organisations, who represented the Philippines, Indonesia, Nepal, China, and Kiribati.

Cunanan, who is considered the Philippines’ foremost leprosy expert, was particularly upbeat about the conference’s focus on improving communications to stakeholders.

“One of the most valuable things to come out of this conference is the learning about social marketing, and what interventions we can use,” Cunanan stressed to the attendees.

Another key takeaway from the conference, Cunanan said, was the recognition of economic opportunity as a vital component of social inclusion strategies for people affected by leprosy.

“I think an important thing that has emerged here is the idea that poverty is really the root of stigmatisation and prejudice,” Cunanan told IPS. “When people have financial resources, the discrimination goes away. Obviously, providing economic opportunity should be a priority for the various national organisations.”

Cunanan pointed out that priority complemented the focus on organisational sustainability, which was an emergent theme at the conference. “It is very similar to the same thinking that organisations need to find income-generating programmes to be sustainable,” Cunanan said. Reiterating the point he made to the assembly, he added that the goal for the organisations should be to put “theory into practise” and develop practical actions from what they learned.

Representatives of participating organisations discussed various national and regional objectives for leprosy advocacy in Asia. A significant outcome of the conference was the formation of a regional secretariat to coordinate and represent the Asian agenda at an upcoming world leprosy congress. Credit: Ben Kritz/IPS

Clear consensus

Starting with an overall theme of “improving social inclusion,” the Regional Assembly of Organisations of People Affected by Leprosy in Asia at the outset identified four areas for discussion: Preserving the history of leprosy and its treatment; defending human rights and eliminating the stigma associated with leprosy; improving the delivery of public health services; and sustainability of the organisations.

The consensus among the participating organisations was that sustainability was indeed a critical priority, and perhaps the most significant challenge faced by leprosy advocacies at the national level.

Another key national-level agenda item agreed by the conference attendees was the need to improve networking with their respective governments, as well as other key organisations. In line with this, developing strategies to improve organisations’ public image, branding, and their marketing efforts was also acknowledged as an important objective for national organisations. During the conference, the importance of understanding and developing effective social marketing was stressed, both through the use of social media and more conventional practises.

The development of a regional secretariat was considered the most important objective at a collective level. The conference participants echoed the sentiments of CSGH’s Cunanan that the shared ideas developed over the three days of talks should not be allowed to “dissolve” when the organisations return to their home countries.

Conference attendees also agreed that creating a “sustainable development strategy” on a regional basis should be prioritised going forward, taking into account the need to strengthen national organisations as well as the regional group. Just what that strategy would entail, however, is still subject to discussion among the various groups. 

Capacity building, improving the organisational and managerial capabilities of national organisations, also emerged as a regional agenda. During the conference, capacity building was expressed as a significant concern for many organisations, since many of their members lack relevant work experience or education. A regional strategy could help pool talent resources among the Asian organisations, at least until some of their own people could gain more experience.

The development of a regional framework and individual national agendas made the first Regional Assembly of Organisations of People Affected by Leprosy in Asia a success, conference facilitator Joseph “Boyet” Ongkiko told IPS.

“What excites me is to see the coming together of different groups, and their coming away with unity of heart and purpose,” Ongkiko said. “With leprosy, there is a commonality in the stories, but what we saw and heard are people moving from victims to victors.”

Nanri told IPS that much still needs to be done.

“There’s a big difference between elimination and eradication. As of today, most countries have eliminated leprosy, but it has not been eradicated yet as new cases continue to appear. To eradicate, what we need is one last big push – or re-activate public attention to leprosy,” he said, adding that until now the information around leprosy has not been well presented.

“If we can better package it, forge better partnership with media and if we can get greater political commitment, we can make that reactivation of people’s attention can happen.”

*Additional reporting by Stella Paul in Manila 

Takahiro Nanri (left - black jacket), Executive Director of Sasakawa Memorial Health Foundation, joins hands with a leprosy survivor (right). Credit: Stella Paul/IPS

By Stella Paul
MANILA, Mar 5 2019 (IPS)

Takahiro Nanri is the Executive Director of Sasakawa Memorial Health Foundation which has been supporting the global fight against leprosy for almost five decades. Since 2014, Nanri has been leading the foundation’s leprosy projects across the world and has deep insights into the challenges faced by the people affected by leprosy as well as the organisations that work with them.

He also shares the dream of Yohei Sasakawa – the chairman of Nippon Foundation – to see a leprosy-free world and believes that despite several challenges and roadblocks, this dream is indeed possible to realise.

In an exclusive interview with IPS, Nanri talks about the idea behind the regional assembly of leprosy-affected people in Asia that was held in Manila.

He also tells how people who are affected by leprosy  are treated as social outcasts and why they must be integrated with the rest of the society. Finally, Nanri shares his views on how and why leprosy-affected people’s organisations should become sustainable.  Excerpts of the interview follow:

Takahiro Nanri is the Executive Director of the Sasakawa Memorial Health Foundation which has been supporting the global fight against leprosy for five decades. Credit: Stella Paul/IPS

Inter Press Service (IPS): Is there a reason behind Mr Sasakawa’s personal interest in leprosy? Why has the foundation continued even when it is not a big global threat anymore?

Takahiro Nanri (TN): As far as I know it was in the 1960s [when the Sasakawa family] visited leprosariums in some countries like Korea, South Korea, Nepal and at that time there was no Multidrug Therapy ( MDT) and the situation in the sanatoriums was very severe. So they had decided to fight against leprosy and launched the leprosy elimination programme and even established the Sasakawa Memorial Health Foundation.

I am very proud of the fact that this foundation has continued to work on the same issue for 50 years because, although compared to other diseases, this may have decreased, but there is still no end to leprosy.

IPS: How long have you been working on leprosy and what has been your biggest observation?

TN: I have been working on leprosy since 2014. But I have been working on poverty issues for the past 25 years. People affected by leprosy are really poor. So, working for leprosy is in a way working on poverty too.
Several years ago, there was the concept of the bottom of the pyramid; and we talked of the people living at the bottom of the pyramid and how to uplift them. We talked of using microfinance, social business approach etc. But I have realised that the people living with leprosy are actually living outside of the pyramid. That is why I feel integration is very, very important.

IPS: How did you come up with the idea of the Regional Assembly of Organisations of Leprosy- Affected People in Asia?

TN: Last September, we had a small meeting. We invited and had a discussion with some of the people’s organisations from India, Indonesia, Brazil and Ethiopia on what could be done. This September, there will be the World Congress on Leprosy where there will be academics, experts, governments. The congress is a crucial event but often organisations of the affected people are left behind. So, we came up with the idea of organising a pre-congress event where the affected people’s organisations so that it can also be a way for preparing themselves for the congress.

IPS: Why is sustainability still such a big issue for organisations of leprosy–affected people?

TN: Sustainability is not only an issue of leprosy affected people, but also for all the NGOs of the world. I don’t really have an answer here. It depends on each organisation, each leader. Every NGO, every organisation has to find its own way and its own strategy to sustain itself. Should they approach foundations, survive on external grants, seek membership fees, donations , do social business—it’s up to them. As foundations we can provide financial grant, but not forever. What we can do, however, is think together on what could be the next step.

IPS: There are many hidden cases in the world of leprosy. Can you share an example of a good action by a government that tried to act on this.

TN: In India, the government made a very brave decision. In 2016 they started a campaign to identify the endemic leprosy cases all over the country. And since then, every year, they do case detection camps. It has brought in the open many new cases that were previously hidden. It also resulted in an increase in the number of leprosy cases in the country, but after that it started to decrease as the cases were treated . So, this is an example I feel other governments can also follow.

IPS: How are you feeling now that the assembly has concluded?

TN: My expectation is very simple: this venue is for the people affected by leprosy. They should be able to discuss whatever they want to and decide whatever they want to decide.
Here, we saw is they are trying to be more pro-active, opening up,coming up with some issues, some ideas on how they can strengthen their partnership, soI am happy.

Thobias Alexander Manas (R), here with his former social worker Kalep Manikari (L), was shunned and driven from his school, home, and village in West Timor when he contracted leprosy as a teenager. Thanks to individual intervention and skills training, Thobias, now age 52, owns a sewing shop and a rice and poultry farm, and is a community leader in the village that once rejected him. Credit: Ben Kritz/IPS

By Ben Kritz
MANILA, Mar 4 2019 (IPS)

The tragic tale of Thobias Alexander Manas’s personal experience with leprosy is all too typical.

Manas, who is now 52, is from West Timor, Indonesia, and was afflicted with leprosy as a grade 10 student. The reaction to his illness as soon as he exhibited signs of the disease was predictable. Shunned by his friends and forced to leave school, Manas was eventually driven out of his family’s home by his sisters and exiled from his village. He was eventually reduced to an isolated existence in a shanty he cobbled together from discarded materials, he told IPS through an interpreter.

When his disease became too painful–it had progressed to the point where Manas suffered permanent deformity of his hands–he made his way to a government health clinic where he was finally properly diagnosed and prescribed treatment. Fortunately for Manas, the clinic had a referral arrangement with UK-based Leprosy Mission International, which offered assistance to Manas.

“Thoby had to end his schooling because of his sickness, and so the most important thing was to offer him some kind of skills training,” explained Kalep Manikari, a former field worker for Leprosy Mission International and now a youth minister. Manas received training in tailoring, and was able to return to his village and set up a small shop.

His talent in spite of his disability helped to overcome the stigma he had experienced earlier, and it helped that Manas had been shrewd in his choice of vocation: His village only had one other clothing maker – who has now been his wife for 19 years. “Still, my family was against the marriage, because I had been sick,” Manas tells IPS through his interpreter. “But I said, it’s up to us to manage our lives, so we went off and married without their consent.”

Facing the prospect of losing not just one but both of the only people who could provide well-made clothing in the village, Manas family eventually accepted his marriage and his business thrived; he explained that he had recently diversified into poultry and rice farming, and had been able to send his daughter to college. Is was not without some pride that Manas described how he is now considered “well-off,” and has been transformed from a once-shunned leprosy sufferer to one of his village’s leaders.

Conference attendees at the Regional Assembly of Organisations of People Affected by Leprosy in Asia held a brainstorming session to develop ways in which their groups could generate sustainable incomes. Credit: Ben Kritz/IPS

Practical social entrepreneurship

Skills and livelihood training has always been a key objective of organisations supporting people affected by leprosy, and the three-day conference was filled with success stories much like Manas’s. While this remains a priority strategy, leprosy advocacy groups are shifting more of their focus toward organisation-level social entrepreneurship.

In a workshop session at the Regional Assembly of Organisations of People Affected by Leprosy in Asia in Manila on Monday afternoon, conference participants discussed various ways their groups could generate revenue through social entrepreneurship.

The approach is as much practical as it is aspirational. A common theme that emerged in the conference’s first day was the challenge faced by organisations in achieving and maintaining financial sustainability. Government and other donor grants are variable, and unavoidably limited. As Dr. Takahiro Nanri, the executive director of the Sasakawa Memorial Health Fund (SMHF), commented, “We are willing to give a great deal of support to these organisations, but whether we wish it or not, sometime it will have to end. Hopefully that does not happen before the organisations are able to stand on their own, so that is what we are trying to help them achieve.” SMHF is a sister body of the Nippon Foundation (TNF), one of Japan’s largest foundations.

Social entrepreneurship, the conference participants agreed, was a practical approach to meeting financial and social needs. Revenues from products created by organisations of people affected by leprosy fund the organisations’ activities, while providing livelihoods for their beneficiaries.

Even though there is a great deal of enthusiasm for the idea of organisation-level social entrepreneurship, there was a sense among the conference participants that in some circumstances success might be more easily described than achieved. Differences in resources and capabilities may narrow options for some organisations and expand them for others.

That reality makes it important for organisations to give equal attention to both collective and individual entrepreneurial opportunities, Manas suggested. “I just needed a chance. It’s important that organisations help people who can help themselves.”

Itinnenga Uan—country head of Pacific Leprosy Foundation in Kiribati (left) and Kurarenga Kaitire, travelled for almost 24 hours  to reach Manila, the capital of the Philippines, to attend the Regional Assembly of Organisations of People Affected by Leprosy in Asia. Credit: Stella Paul/IPS

By Stella Paul
MANILA, Mar 4 2019 (IPS)

Kurarenga Kaitire lives in Kiribati—one of the world’s most climate-vulnerable nations. Already vulnerable to nature, the 29-year-old mother of five has faced a series of vulnerabilities over the past decade, including facing social stigma and domestic abuse.

The reason: she has leprosy—a disease still dreaded by many in the world.

Currently in Manila to attend  the ongoing 3-day Regional Assembly of Organisations of People Affected by Leprosy in Asia, Kaitire tells her story of personal loss and triumph with IPS.

A 2010 medical test confirmed that Kaitire had leprosy, news she quickly shared with her husband of two years. What happened next was unexpected.

“He went cold. He stopped coming near me or our child. From next day he would not come home in time. He would not touch me and when I questioned him on why he was behaving like that, he beat me up and cut off my hair,” she tells IPS.

When she could not take the beatings any longer, Katire threw her husband out of the house. He then stripped the home of its roofing, making the house uninhabitable.

It was around this time that she was introduced to Itinnenga Uan—country head of Pacific Leprosy Foundation in Kiribati. The foundation runs a welfare programme for leprosy affected people and Kaitire’s conditions qualified her for it.

“She was single [divorced], she had physical deformity and she faced discrimination too. So we helped her [boost her income to rebuild] the house. She is very hard working and had tried many things to have an income, but now she sells vegetables and potable plants. Now she has a better way to support herself and her children,” Uan tells IPS.

Kiribati has only 118,000 people. But for such a small population, the number of people affected with leprosy is quite large as each year over 200 new cases are reported. The low-lying and sinking Pacifci island nation has the highest percentage of people affected by leprosy compared to the total population.

And despite being a tiny country, the level of discrimination and stigma is just as high as everywhere else in the world, Uan reveals.

Itinnenga Uan—country head of Pacific Leprosy Foundation in Kiribati (left) and Kurarenga Kaitire, a leprosy survivor, talk about how their home nation of Kiribati is vulnerable to climate change. Credit: Stella Paul/IPS

For a country which is considered lost to rising sea levels, this stigma is an added burden and one that is difficult to cope with. The government of Kiribati, which heavily relies on international aid for running welfare programmes, has just started to provide financial support to the people affected by leprosy. This is aside from providing free basic medication.

But to access the support packages, one must first be graded by the government. Grading is a clinical system of classifying stages of the disease for treatment purposes. According the the World Health Organisation (WHO), Grade 0 means no impairment, with Grade 2 meaning visible impairment. Scores are added also by combining indicators on six body sites and a final grades range from 0 to 12.

Those with the highest grade receive 50 Australian dollars a month.

However, the government has made significant progress in creating public awareness.

“People are highly aware of leprosy because there are regular programmes on public radio which give a lot of information. In fact Kurarnega Kaitire went to a doctor for a medical check up only after she had listened to a  radio programme on leprosy,” Unan says.

But there is still a lot left to be done.

Programmes and policies that can address the vulnerabilities of leprosy affected people who are also climate vulnerable is one of them.

For example, many of the people in Kiribati are severely crippled by leprosy. Many others are living with physical disabilities, which include loss of eye sight. There is still no climate policy that particularly designed for these people with special need.

“Because of the sea level rise, we are sinking. There is constant heavy rain, wind and flooding. So our government recently has announced that we all can elevate our houses to a higher level. If I want, I can build 4-5 stories on my house. But those who are immobile (with leprosy), how will they climb to such heights? What is the alternative for them?” Uan asks.

Kaitire who travelled for almost 24 hours  to reach Manila, the capital of the Philippines, admits that she is experiencing stiffness in her legs already. She also has just spoken to her daughter in Kiribati over the phone and learnt that its raining heavily there. The thought of another 24-hour journey and multiple flights and walking in the middle of a flood is intimidating for her. “I will come to your home,” she tells Uan, trying to humour herself. Uan’s home is closer to the country’s airport and not affected by the flooding.

There is no magic wand that either Uan or Kaitire know of. However, they are in Manila with the belief that there will be new ideas and connections that they can make to help themselves in the future. The Sasakawa Memorial  Health Foundation/the Nippon Foundation (TNF) which supports leprosy projects across the world, is yet to work in Kiribati. If they enter the country and partner with the government, there can be better support for the leprosy affected people, Uan hopes. TNF has been supporting leprosy eradication across the globe since the late 1960s, even supplying free multidrug therapy through the WHO.

Kaitire, on the other hand, is more focused on helping her children obtain an education and making herself strong enough to deal with all the challenges she may still face—be it social, physical or financial.

Recently, her ex-husband returned to her, asking for forgiveness but she didn’t take him back. “I need medication, financial stability and above all, dignity. I don’t want a man who can’t give me that.”

By Stella Paul
Mar 4 2019 (IPS)

Marie Lisa Dacanay is the president of Manila–based Institute for Social Entrepreneurship in Asia. With 20 years of experience in development management, social entrepreneurship and enterprise development, Dacanay is also a university professor and an acclaimed author with several books on social entrepreneurship in Asia.

Today, Dacanay was at the Regional Assembly of Organisations of People Affected by Leprosy in Asia where she presented some valuable ideas and advises on how to build successful models of social enterprises. The assembly was supported by the Nippon Foundation (TNF)/Sasakawa Memorial Health Foundation (SMHF).

In this video she tells IPS what models of entrepreneurship can especially be tried by how people from the most marginalised and vulnerable sections of the society – such as those affected by leprosy.

Filipino businessman Ariel Lazarte was diagnosed with Hansen’s Disease in 2014. Since his treatment he has built a successful business and has become a patron for those affected by the disease. Credit: Nalisha Adams/IPS

By Nalisha Adams
MANILA, Mar 4 2019 (IPS)

When Ariel Lazarte from Quezon City, Philippines, was first diagnosed with leprosy in 2014, his life seemed as if it were falling apart. But now more than four years later Lazarte’s life is a huge contrast from the poverty and isolation he experienced as a person affected by leprosy.

Now the owner of multiple businesses, including ones in transport and construction, and the owner of a large family home as well as an in-patient home for persons receiving treatment for leprosy, Lazarte was driven to become a success by his strong desire to help others.

“I didn’t get any help from my family, my friends, my relatives. I only trusted the doctor,” Lazarte tells IPS of the year he spent receiving treatment for leprosy, which is also known as Hansen’s Disease. “I was very thirsty for the help from others. I was in need.”

He was one of the participants of the Regional Assembly of Organisations of People Affected by Leprosy in Asia. The assembly is being held in Manila, Philippines, Mar. 3 to 5 and is supported by the Nippon Foundation (TNF)-one of the biggest private foundations in Japan that has been working to provide assistance to people with leprosy since the late 1960s.

At the time of the diagnosis, the then 32-year-old who worked as a manager in a fast food store, was able to afford treatment at a private hospital. But instead of being cured, his condition worsened.

Eventually, he lost his job and felt more and more alone as his wife stopped sharing a bed with him and his friends stopped visiting. His wife’s dried fish kiosk business become their sole support of income and much of the money was spent on survival and not medicine.

And while he kept receiving treatment, he kept thinking: “I’m dying.”

Eventually Lazarte’s doctor told him he couldn’t cure him and referred him to the Jose Reyes Memorial Hospital. He began an 8-month treatment course that eventually cured him.

“The doctor promised me I would be helped. And I promised that I would help those with leprosy,” Lazarte says, explaining that it didn’t want others who were affected by the disease to experience what he did.

According to a World Health Organisation report, the country has 2,000 new leprosy patients a year. Dr Maria Francia Laxamana, assistant secretary of Health in the Department of Health, says only one in four receive treatment because many fear the social stigma.

Unique to the Philippines, jeepneys are long wheel based taxis, converted from American jeeps left in the country after World War II. Credit: Nalisha Adams/IPS

But after a year of treatment that cured him of Hansen’s Disease, Lazarte started fulfilling his promise.

Lazarte started small. With 15 dollars, he bought some shorts and pillows and began selling them. Soon he bought a tricycle – a Filipino transport bicycle with a small cab. And soon he owned seven of these.

And then later he was able to afford a jeepney. Unique to the Philippines, jeepneys are long wheel based taxis, converted from American jeeps left in the country after World War II.

He is now the owner of 12 jeepneys.

With the money from the businesses he built a 4-bedroom in-patient home for those receiving treatment for Hansen’s disease. Situated just outside the capital, it houses people receiving treatment at the Jose Reyes Memorial Hospital. The property also has a car so the patients can drive to the hospital, which is some 45 minutes away, for their check ups.

He’s very clear about what he spent the income from these business on in the early days. “I knew that my wife was able to support my children …so I kept on dreaming of having enough money to buy my afford to the house [for the leprosy patients].”

While they now have a large home and not all Lazarte’s income goes into the in-patient home, Lazarte says that wants the Hansen’s Disease patients to learn to self-sufficient. They have a garden to plant vegetables for resale and recently received funding for a poultry project.

“I started my own pathway for my own direction,” he tells IPS.

Dr Maria Francia Laxamana, the Assistant Secretary in the Philippines Ministry of Health, eels strongly about the social exclusion and stigma experienced by the leprosy patients and is eager to make a notable change in the way the society perceives leprosy and those who live with it. Credit: Stella Paul/IPS

By Stella Paul
MANILA, Mar 3 2019 (IPS)

Dr. Maria Francia Laxamana is the Assistant Secretary in the Philippines ministry of health. With nearly two decades of  work both as a senior government official and also as an expert in several non-government organisations, Laxamana has deep insight into the issue of leprosy in this Southeast Asian nation and the challenges faced by those who are affected by the disease.

She feels strongly about the social exclusion and stigma experienced by the leprosy patients and is eager to make a notable change in the way the society perceives leprosy and those who live with it.

On the sidelines of the ongoing  Regional Assembly of Organisations of People Affected by Leprosy in Asia in Manila, Laxamana tells IPS how a new, holistic approach is needed to eradicate leprosy  and  improve the quality of life for all leprosy patients.

The three-day event was organised by the Philippine government-run Culion Sanitarium and General Hospital (CSGH), the Coalition of Leprosy Advocate of the Philippines, and the Sasakawa Memorial Health Foundation (SMHF) and its parent organisation the Nippon Foundation (TNF). Chairman of TNF and the World Health Organisation (WHO) goodwill ambassador for Leprosy Elimination, Yohei Sasakawa, was recently awarded the Gandhi Peace Prize by the Indian government for his work towards the elimination of leprosy worldwide.

She also informs how small measures like helping the children of leprosy-affected families can help remove societal stigma and  pave ways for social inclusion.

Inter Press Service (IPS): How and at what point is it decided to separate a family from the community?

Dr Maria Francia Laxamana (MFL): Previously, it was the government that decided. If a child tested positive, it would be separated from the mother. That used to be very harsh.  But now, its not like that anymore. Now if a baby shows the symptoms, the baby is tested and if the results are positive, then the baby is treated along with the mother and the father, but it stays with the parents. The treatment now is family based.

IPS: Typically, who are the leprosy patients in the Philippines?

MFL: Actually, generally those who are afflicted by leprosy are poor people. The main reasons are that  (lack of) nutrition, lack of awareness, remote location of their areas and lack of access to the services.

IPS: Have you met anyone whose condition matches this? How did it change you?

MFL: Yes. In the Autonomous Region of Muslim Mindanao, I met a woman – a mother of a 2-year-old boy. She already had visible physical symptoms and her hands were already deformed. I asked her, have you been receiving the treatment? She said, ‘No, I don’t go to the health center anymore because the staff there say I can infect them’.  So I told her, you have to be tested before anyone can say you are infective. But in my mind, I thought, so this is what is the progress we have had: we have done advocacy, awareness generation  – everything and yet the staff here are not willing to go near the patients.

That’s when I learnt that there had not been any amendment or reviews of the previous policies. I also asked myself, why is the budget for leprosy so low? And I came to think that there maybe also lapses in our government, maybe leprosy is not  a priority for  our government. Maybe they think that there isn’t a Hansen’s disease here in the Philippines anymore.

IPS: You had left the government job to work with the non governmental organisations, such as USAID, EU, Save the Children, among others. But you returned in 2016. How are you working differently this time?

MFL: When I was offered the position of the Assistant Secretary–which is a part of the Executive Committee (a high level decision-making group)–I thought that I could now make actual impact by discussing an issue with my fellow committee members and making constructive recommendations for deciding on a new policy. For example, while working for the non-government organisations, I discovered that we are making policies without any inclusion of inputs from local level, from the communities. And that is something I can now raise this issue to the national government.

IPS: What changes do you expect to see in next five years?

MFL: I have been talking to the sanatoriums in the Philippines. They have many in-house lepers who are not active anymore, they are just living in the sanatoriums compounds. What we did was turning some parts of the sanatoriums into general hospitals. We can fund the hospitals with facilities and equipment, so that outside patients can go in for treatment and the in-house patients can continue to get treated, but the outsiders will know that they are not active anymore. This will augment financial resources.

So, right now I am telling the sanatoriums that let us develop the standards based on the facilities , equipment and the human resources that they need. Once we have this standard, we can propose to the government for a specific, yearly budget  allocation for the leprosy programme.

IPS: You are very vocal about social inclusion of the affected people and their families. How can this be achieved ?

MFL: A great way to do this is to take a holistic approach by providing the affected people opportunities to education, employments, training etc. For example, in Culion, I met a leprosy affected family whose daughter wanted to go to college and become a nurse. So I said, maybe we can ask the governor of the state to provide her a scholarship. Now, if such a child is brought to a college and given the opportunity to study, she can interact with a hundred others there and inform them about her family, their life. People around her can understand that she is not infective – this way a new level of engagement can begin.

By Stella Paul
MANILA, Mar 3 2019 (IPS)

Dr Maria Francia Laxamana, assistant secretary of health in the Department of Health, Philippines outlines her recommendations for a leprosy country by 2020.

She spoke to IPS the first ever Regional Assembly of Organisations of People Affected by Leprosy in Asia.

The three-day regional event was organised by the Philippine government-run Culion Sanitarium and General Hospital (CSGH), the Coalition of Leprosy Advocate of the Philippines, and the Sasakawa Memorial Health Foundation (SMHF). The SMHF’s parent organisation the Nippon Foundation (TNF) has been playing a decisive role in leprosy elimination since as far back as the late 1960s. From 1995 to 1999, TNF distributed multidrug therapy for free across the globe in cooperation with the World Health Organisation. 

According to Laxamana, only one in every four in the Philippines seek out medical treatment for the disease and social stigma is one of the main reasons why they hide their condition.

For the Philippines to achieve the global target of reducing leprosy cases by 2020, it would be crucial to have policies that could look at the disease in the local context and can provide solutions that are locally applicable.

Dr. Takahiro Nanri, Executive Director of the Sasakawa Memorial Health Foundation, explained the need for leprosy CSOs to develop income-generating plans to cover gaps in sustainable funding. The Sasakawa Foundation is a major supporter of organisations for people affected by leprosy throughout Asia. Credit: Ben Kritz/IPS

By Ben Kritz
MANILA, Mar 3 2019 (IPS)

Strengthening the participation of persons affected by leprosy, or SPP, has proven to be an effective strategy in reaching out to often isolated sufferers in local communities throughout Asia. A significant challenge to civil society organisations, however, is finding enough management talent to maintain and expand the programmes.

Capacity building, providing organisational and management training to SPP participants doing the heavy lifting for leprosy advocacy groups in their work in individual countries, was highlighted as a significant priority by the participants at the Regional Assembly of Organisations of People Affected by Leprosy in Asia in Manila on Mar. 3.

Starting from scratch

The challenge is made even more difficult because many programme volunteers come from marginalised communities, or have had their own education interrupted by complications or social ostracism associated with leprosy.

Amar Bahadur Timalsina, president of International Association for the Integration, Dignity and Economic Advancement (IDEA), Nepal, told IPS that capacity-building is likely the biggest problem facing his organisation. “Many of the people working with us are completely uneducated, and some are even illiterate,” Timalsina said. Many of Nepal’s leprosy patients are found in poor communities, and face significant discrimination.

“Right now, we are focusing on building the capacity of our board members and programme managers,” Timalsina said. “Fortunately, we are able to work with the Leprosy Mission Nepal, who are able to provide us with expertise in business management, finance, and social programme management.”

The discrimination that prevents leprosy sufferers from accessing education and seeking out medical and social assistance in Nepal is perhaps a bit stronger than in some other countries, as it is still part of the law in one respect. In his presentation to conference delegates, Timalsina highlighted IDEA Nepal’s efforts to amend a constitutional prohibition of marriage between leprosy sufferers and unaffected persons, and to include information on leprosy in the country’s health education curriculum.

Differing approaches

While the capacity-building challenge is a common priority, organisations in different countries have adopted different approaches to addressing it. For example, the focus of PerMaTa Indonesia, which means Gem in Bahasa, places heavy emphasis on emotional and social support for persons affected by leprosy. The organisation also directs much of its attention to youth. PerMaTa’s Yuliati explained that the social focus helped leprosy patients gain acceptance, which is particularly important for young people to have continued access to education. Over the long term, it will help the skills capacity of the organisation; in the short term, however, PerMaTa must still rely on some degree of outside expertise.

China’s Handa faces a similar challenge, but has actually been able to quantify its need for expertise. The organisation, which has about 3,500 members across 14 provinces and serves nearly 9,500 beneficiaries, has structured its board so that one-third of its members are private-sector professionals, Handa representative Qi Xiuli told the conference delegates. With this arrangement, overall policy objectives are generated by persons affected by leprosy who make up two-thirds of the board, while the professional board members take charge of practical implementation of the organisation’s initiatives.

Capacity tied to financial sustainability

Beyond the day-to-day goal of carrying out programmes and managing organisations in an efficient way, capacity-building is key to helping the various organisations secure financial sustainability.

In a group discussion, Dr. Arturo Cunanan, Director of the Philippines’ Culion Sanitarium and General Hospital and the country’s foremost leprosy advocate, pointed out the need for organisations to secure a substantial initial investment in order to be able to work on sustainability. Cunanan suggested that this might be one way organisations could address their capacity gaps.

“That initial investment may be in the form of a financial investment, but it could also be a technical or capacity investment,” Cunanan told the conference delegates.

Sasakawa Memorial Health Foundation (SMHF) Executive Director Dr. Takahiro Nanri pointed out, however, that a financial investment would inevitably be limited. “You can start off with grants from government or non-government sources, you can gather some financial resources in the form of membership fees, but these are limited,” Nanri said. “In order to be truly sustainable, the organisation has to create an income-generating programme,” and for that, the organisation would need sufficient expertise. SMHF is a sister organisation of the Nippon Foundation (TNF), one of Japan’s largest foundations. Since the early 1960s, TNF has been actively working to eradicate leprosy across the globe and this has included providing free multidrug therapy through the World Health Organisation.

Having that capacity, however, would make achieving sustainability much easier, boosting the organisation’s credibility to potential donors. “We know you probably couldn’t generate real income to sustain your organisation for quite some time,” Nanri told the delegates. “But we [Sasakawa Foundation] could justify supporting you for, say, three years, if we could see that you were able to develop a business plan that would be viable in that amount of time.” Expertise in business and management is needed to be able to develop such plans.

Fortunately, most organisations seem to be successfully balancing the goals of becoming self-reliant and accessing enough expert help in planning and carrying out financial and operational strategies. In the group discussions, however, all the conference participants agreed that greater public awareness of their work would greatly benefit their respective organisations’ goals.

Coalition of Leprosy Associations of the Philippines (CLAP) community outreach organisers Jennifer Quimno (left) and Michelle Ann Oreo (right). Credit: Ben Kritz/IPS

By Ben Kritz
MANILA, Mar 3 2019 (IPS)

Jennifer Quimno could put anyone at ease. So when she travels across the Philippines as part of peer to peer programme that helps identify new leprosy cases, people generally allow her to examine them.

“We met a young boy, about 16 years of age, who had symptoms of leprosy, and we needed to examine and send pictures of his skin rashes to the doctors for diagnosis,” Quimno told IPS. Quimno, herself a former leprosy patient, was able to put the teenager at ease. “One of his rashes was on his buttocks. He was a little embarrassed to show it at first, but when I asked him nicely, he let us take a look.”

That unique sensitivity toward persons affected by leprosy is a valuable resource in identifying new cases and encouraging patients to seek treatment, Frank Onde, the president of the Coalition of Leprosy Advocates of the Philippines (CLAP) explained.

“Strengthening the participation of persons affected by leprosy is the most effective way to reduce the burden on government health departments,” explained Onde, one of the keynote speakers at the Regional Assembly of Organisations of People Affected by Leprosy in Asia. The assembly is being held in Manila, Philippines, Mar. 3 to 5.

Helping their own

Under the programme organised by CLAP, former patients are trained in community outreach and help to identify potential cases for diagnosis and treatment. Using people who have personal experience with the disease helps to reduce the reluctance of leprosy sufferers to seek treatment, Onde said. Not only can the outreach workers relate on a personal level with others affected by leprosy, also known as Hansen Disease, their own experience also helps healthcare personnel make accurate diagnoses, he added.

Launched in the cities of Manila and Cebu in November 2018, the programme, ‘Strengthening Participation of People Affected by Leprosy in Leprosy Service’, known as SPP, is currently working among known affected communities. It pursues the twin objectives of gathering demographic information to update the Philippine Department of Health database and identifying relapse or new leprosy cases.

Quimno, who is a field health officer with the regional Department of Health office in Cebu, said that personal experience helps to build trust. “We know what they are experiencing,” she explained. “We can also tell them exactly what the consequences of not seeking timely treatment will be.”

Coalition of Leprosy Associations of the Philippines (CLAP) president Frank Onde (left), and CLAP volunteers Mark Anthony Esparas (centre) and Ariel Lazarte (right). Credit: Ben Kritz/IPS

Grassroots connections

While CLAP’s activities are officially supported at the national government level—the coalition is represented on the Department of Health’s National Leprosy Advisory Board—it is at the smallest level of government where the initiatives of the coalition’s individual organisations are substantially embraced.

“We coordinate with local government units at the municipal and barangay [village] level, including the mayor’s office and the city or municipal health official’s office,” Quimno explained. “Since our individual member groups are the ones doing most of the work right in their own communities, they are really embraced by their local officials.”

Mark Anthony “Macoy” Esparas, a CLAP outreach volunteer in Manila, agreed. “We do receive a lot of help from the local governments,” he told IPS. “What we do is helping them as well.”

CLAP advisor Joseph “Boyet” Ongkiko highlighted the success of one CLAP member group in Cotabato, Mindanao, southern Philippines, which formed a cooperative of motorcycle taxi drivers to provide livelihoods for people affected by leprosy. “At first, the community was reluctant to patronise the drivers,” Ongkiko told the conference attendees. “Now, they have been accepted so well, that the cooperative even has non-Hansenite members.”

Other livelihood activities pursued by the member groups of CLAP—the coalition represents a total of 19 local organisations across the Philippines—include production and marketing of various household products, clothing, and small-scale farming.

Financial sustainability challenge

While CLAP’s initiatives are steadily gaining traction among people affected by leprosy and local communities alike, the organisation is concerned about its prospects for sustainability.

“That is our biggest challenge right now,” Onde said. “At the moment, our financial support is really only coming from the Sasakawa [Memorial Health] Foundation (SMHF), and we would like to better secure our future.” SMHF, along with its parent body the Nippon Foundation (TNF) are co-sponsors of the assembly along with the Philippine government-run Culion Sanitarium and General Hospital (CSGH) and the Coalition of Leprosy Advocate of the Philippines (CLAP).

Financial sustainability is a common worry for leprosy advocacy groups throughout the region, but in the Philippines, Onde explained, CLAP and other organisations face a unique challenge. In 2013, a large-scale conspiracy dubbed the “Pork Barrel” scam and involving the misappropriation of billions in legislators’ development funds was exposed. Funds intended for local projects were diverted to fabricated non-government organisations and then pocketed by the scam perpetrators, including a number of lawmakers.

“Since the Pork Barrel scam, it has become difficult for a lot of civil society groups, not only us, to attract donors,” Onde said. “So one of our important tasks is to try to share information about what we’re doing to convince potential financial supporters that we are a legitimate, sustainable organisation.”

One advantage for CLAP is its close connection to the government’s own leprosy control efforts. “We have a consultative role in the government’s National Leprosy Control Programme and the Leprosy Roadmap 2016-2022,” Onde said. “That does help give us some credibility, and of course, we strive to do good work to match that.”

Amar Bahadur Timalsina, president of IDEA, Nepal, a group founded by people with leprosy for people with leprosy, is in agreement that there needs to be greater inclusion for those affected by the disease. Timalsina was affected by disease, also known as Hansen’s disease, as a child. Credit: Stella Paul/IPS

By Stella Paul
MANILA, Mar 3 2019 (IPS)

Growing up in Kathmandu, Nepal, Amar Bahadur Timalsina wasn’t allowed to attend school as a young boy because he was affected by leprosy. But decades later, after treatment and being able to re-integrate into his community, the boy who was once denied an education is now inspiringly the principal of a school of 400 students.

“I suffered from leprosy when I was 12 years old. At that time I was forced to leave my village and my community,” Timalsina told IPS.

But after that Leprosy Mission Nepal supported me with a recommendation letter, he was subsequently able to attend an orphanage “where I got an opportunity to continue my studies.”

“At my school there are 400 students and 30 staff. Now if I go to my village, there is no discrimination, no stigma and everyone welcomes me like any other person,” he said.

Timalsina, who is president from the International Association for the Integration, Dignity and Economic Advancement (IDEA), Nepal, a group founded by people with leprosy to support others with the disease, is in agreement that there needs to be greater inclusion for those affected by it.

Participants at the Regional Assembly of Organisations of People Affected by Leprosy in Asia kicked off today, Mar. 3 in Manila, Philippines, made a vocal appeal to adopt and embrace greater social inclusion and build a stigma-free society for those affected by leprosy

The three-day regional event, which is the first of its kind to be held, was organised by the Philippine government-run Culion Sanitarium and General Hospital (CSGH), the Coalition of Leprosy Advocate of the Philippines, and the Nippon Foundation (TNF) and its sister organisation, the Sasakawa Memorial Health Foundation (SMHF). Since the late 1960s TNF has been actively supporting the fight to eradicate leprosy worldwide including providing free multidrug therapy through the World Health Organisation.

Participants at the Regional Assembly of Organisations of People Affected by Leprosy in Asia kicked off today, Mar. 3 in Manila, Philippines, made a vocal appeal to adopt and embrace greater social inclusion and build a stigma-free society for those affected by leprosy. Credit: Stella Paul/IPS

“The biggest challenge before us today is stigma,” said Dr. Maria Francia Laxamana, Assistant Secretary in the Philippines Department of of Health and one of the key speakers at the conference.

According to Laxamana, only one in every four in the Philippines seek out medical treatment for the disease and social stigma is one of the main reasons why they hide their condition. So, for the Philippines to achieve the global target of reducing leprosy cases by 2020, it would be crucial to have policies that could look at the disease in the local context and can provide solutions that are locally applicable.

For example, we should not be looking at leprosy just as a disease, but take a holistic approach and provide the affected people with a package of support that includes not only drugs, but also education, vocational skill trainings and employment. Such a package will not only help improve their quality of life, but also pave the way for greater social inclusion, resulting in removal of social stigma, she said.

“Integration is very important and we as a foundation, hope, we can contribute to the integration [of people affected by leprosy] with the society,” said Dr. Takahiro Nanri, Executive Director of SMHF and the second key speaker of the day. Reiterating the dedicated and continuous support of the foundation to eradication of leprosy, Nanri informed that SMHF has been organising regional assemblies across the world, including Africa, Latin America and the current one in Asia, to facilitate greater engagement and participation of all experts and leaders working on the disease.

Alice Cruz, United Nations Special Rapporteur on the elimination of discrimination against persons affected by leprosy and their family members, pointed out that social exclusion and stigma was having a devastating effect particularly on the children of those affected by Hansen’s disease. Addressing the assembly virtually, Cruz emphasised the need for sensitisation of school teachers because in many countries children with leprosy were expelled from schools by  the teachers themselves.

“Teachers in endemic ares should be trained on leprosy ad the schools should be one of the first places to raise awareness on leprosy’s signs and symptoms, but also on the human dignity and rights of the persons affected,” she said.

Dr Arturo Cunanan, chief of CSGH, said that while those working in the field always talk about the social stigma and discrimination that people with leprosy face, the question is how to measure this. “Usually, government will not address issues of human rights, not unless they know about the issue of burden.”

There are representatives from six nations in the region attending  the assembly: Philippines, Japan, Indonesia, China, Nepal and Kiribati. While some are working with the government at the policy level, others are working directly with the affected communities and are expected to  share their respective experiences and impacts to find a common, collective way to fight leprosy more effectively in the future.

The Philippines has the highest incidence of leprosy of any country in the region – about 1,700 new cases have been identified in each of the last three years. Credit: moyerphotos/CC by 2.0

By Ben Kritz
MANILA, Mar 2 2019 (IPS)

The stubborn challenge of diagnosis and treatment of leprosy among difficult to reach populations in the Philippines should soon become easier with the rollout of a mobile app connecting field health workers with physicians and clinics.

Officially launched at the end of January after years of testing, the app was created by Philippine developer MetaHelix in cooperation with the Department of Health (DOH) and pharmaceutical company Novartis. It will allow barangay (village) health workers to connect remotely with specialists to confirm diagnoses and plan treatment of isolated leprosy patients.

First launched as a pilot in 2014, the Leprosy Alert and Response Network System (LEARNS) app allows healthcare workers to “send images of suspect leprosy lesions and symptoms to a specialist”.

“LEARNS promotes early case finding and helps reduce delays in diagnosis and treatment,” Novartis said in a statement when the app was launched. “LEARNS also provides data for disease surveillance, patient education, and report generation.”

The new mobile application that was tested in the Philippines for more than a year highlights ongoing efforts against leprosy, or Hansen’s Disease, which is sometimes called “the world’s oldest diagnosed disease”.

In most of the world leprosy is largely considered a disease of the past. According to the World Health Organisation (WHO), leprosy was eliminated as a global public health problem in 2000 because it had a prevalence of less than 1 case per 10,000 people.

However, one of the few remaining places where the disease remains an elevated public concern is the Philippines, which makes the country an appropriate venue for the “Regional Assembly of Organisations of People Affected by Leprosy in Asia,” being held in Manila from Mar. 3 to 5.

The conference is a joint project of the Philippine government-run Culion Sanitarium and General Hospital (CSGH), the Coalition of Leprosy Advocate of the Philippines (CLAP), and the Sasakawa Memorial Health Foundation (SMHF)/the Nippon Foundation (TNF), and seeks to find ways to overcome the last stubborn obstacles to completely eradicating leprosy.

The issues faced by public health advocates and victims of the disease in the Philippines are emblematic of problems faced throughout the region: Difficult detection and treatment of often isolated sufferers, a lack of public awareness and understanding of leprosy, and low prioritisation of public health efforts to treat leprosy and its social impact on the part of governments.

Hidden in plain sight

The treatment of leprosy in the Philippines throughout most of the country’s history has been typical of the way societies everywhere have handled it. Largely ostracised by communities and even their own families, leprosy sufferers were isolated in dedicated facilities and kept out of sight. The two best-known facilities in the Philippines are the CSGH, once the largest facility of its kind in the world, located on Culion Island in the Western Philippines; and the Tala Sanitarium – officially known as the Dr. Jose N. Rodriguez Memorial Hospital – located in Caloocan, a distant suburb of Manila.

Although both facilities are still technically operational, better understanding of the disease and its low communicability has allowed health officials to shift most of their efforts to community-based treatment. According to Dr. Mary Ann Navarro, a Department of Health administrator in Palawan, where a minor outbreak of leprosy among indigenous people was detected in late 2017, in sitio treatment is often the only feasible approach.

“Better treatment options and the relatively low risk of transmission means that it’s not necessary to isolate patients,” Navarro told IPS. “Many cases, such as the ones discovered last year here [in Palawan] are among people with little access to healthcare, so our best option is to bring treatment to them.”

“That also helps to reduce some of the social stigma patients face, by giving us a chance to educate their communities and eliminate some of the fear of the disease,” she added. “Changing social attitudes still is a big challenge, however.”

Situations like the outbreak in Palawan, where eight cases were discovered among an indigenous community in the southern part of the island, are relatively rare. Most cases, according to a local government official, are individuals who remain in the community, but often struggle for acceptance.

“To our knowledge, we have about 10 people from this barangay who come to the health centre for treatment,” Alexander “Bong” Medina, chairman of a barangay in San Jose Del Monte in Bulacan Province north of Manila told IPS.

“The treatment is provided free, and we do our best to assist them socially, but it’s difficult,” Medina explained. “These are poor, what you might call marginalised people to begin with, and they often don’t realise there is assistance available until it’s too late, or they are afraid to come in because of the shame. And we don’t really have resources to go seek them out.”

Persistent problem

The Western Pacific Regional Office of the WHO views the Philippines as somewhat of an outlier in terms of leprosy incidence. The Philippines has the highest incidence of leprosy of any country in the region – about 1,700 new cases have been identified in each of the last three years, although that rate is half what it was a decade ago – and is largely responsible for the region being behind the rest of the world in achieving the 1 in 10,000 benchmark.

According to data from the Philippines’ Department of Health, although the overall prevalence of leprosy is less than 0.4 cases per 10,000, 1,660 new cases were identified in 2017 alone, with about 6.7 percent of those being children under the age of 15. This Southeast Asian nation, which comprises some 7,000 islands, has a population of over 104 million.

To address the problem, the Philippine government in 2016 launched the National Leprosy Control Programme (NLCP), a multi-agency effort involving the DOH, WHO, and a number of private sector and NGO partners with the goal of “a leprosy-free Philippines by 2022.”

To better calibrate the programme’s response and identify pockets where leprosy is still prevalent, the first major initiative of the NLCP is the completion of a baseline population survey, being conducted in cooperation with the Regional Institute for Tropical Medicine and expected to be completed sometime this year.

The programme is also working to raise public awareness and understanding of the disease by promoting various activities, such as World Leprosy Day in January, a national-level Leprosy Control Week in February, and National Skin Disease Detection and Prevention Week, which is held the second week of November.