Meet Dr Ibtissam Khoudri from Morocco’s Ministry of Health

Interviewed by Jessica Cook and Andie Tucker, Global Partnership for Zero Leprosy Communications

Dr Ibtissam Khoudri leads the leprosy programme in Morocco’s Ministry of Health and is a chairperson for the Operational Excellence working sub-group 5 on infrastructure and operational capacity. The communications team from The Global Partnership for Zero Leprosy (GPZL) spoke to her about Morocco’s success in reducing leprosy, the critical issues countries face in trying to get to zero leprosy, and how the partnership’s work can help.

What is your background and how did you come to work in the field of leprosy?

I am a dermatologist and also have degrees in epidemiology and biostatistics. I worked as a dermatologist in an endemic area of Morocco and then moved to the Ministry of Health, where I have been leading the leprosy control programme for the last six years.

As a dermatologist, did you see many patients with leprosy?

I was working in an endemic area in Morocco, so in this city we had cases of leprosy. Overall, Morocco is a low-endemic country, so I saw about five cases per year. During that time, I also had experience doing contact surveillance. We had a strong system of contact surveillance there.

Since 2012, the number of cases of leprosy in Morocco has declined by more than 16 percent per year. What do you think is the key to Morocco’s success? 

In the last several years, Morocco invested in a strong surveillance system, which is better at following up with new cases. Contact tracing is one explanation for Morocco’s success. At a national level, we have been implementing single-dose chemoprophylaxis for household contacts since 2012, and in the last year, demonstrated a clear decline in the number of new cases.

Also, since the implementation of WHO’s protocol in 2006, our government has made significant changes, allowing for better geographical access to health care, early case detection and treatment, and a long duration of treatment. The training of health care workers and the integration of leprosy control services in primary health care services has helped a lot. The improvement of socio-economic conditions has also helped reduce leprosy here.

You lead the Operational Capacity sub-group in our Operational Excellence working group. What kind of work is the group doing?

Our group looks at cross-cutting issues in leprosy, like human resources, finance, evaluation, surveillance and policy. We’re developing a list of best practices that can really help countries that want to move to zero leprosy.

Sharing experiences — real and practical experience from countries — is needed.

There is a need to identify practices that have demonstrated results and to share them with each other.

What do you think are the most important issues for national program managers in leprosy? 

The big issue is how to make early detection of cases possible, and putting a system in place that can follow up with registered cases. More than 60% of new cases are from household and neighbour contacts in Morocco. We need to follow-up with contacts to detect new cases early and help people get treatment. It would also be helpful to document any cases of antibiotic resistance.

The Global Partnership for Zero Leprosy will partner with national programmes on country reviews and road maps. How can we best support national programmes?

The country reviews and the creation of strategic road maps are important for high- and low-endemic countries. For a low-endemic country like Morocco, leprosy is no longer a priority, yet the country still is not at zero leprosy. In situations like this, we need to show national governments how we can maintain activities, perhaps integrating these activities in other NTD programmes. The road map can make clear the activities that are still needed and can give direction for next steps. The ambition is there—we all want to move toward zero—but how? It’s not always clear for countries. This is what the country review and road map can provide.

Reposted with permission from The Global Partnership for Zero Leprosy – originally published 6 May 2019 here.

ILEP at the 72nd World Health Assembly

We have written short précis on four topics that may be of interest to ILEP Members.

• The speech of WHO Director-General, Dr Tedros, in the WHA Opening Session referred to Universal Health Coverage, primary health care, reforms to the WHO, and three key takeaway messages for delegates. See a summary report here.
• WHO delivered a briefing on Universal Health Coverage, which is considered fundamental if the world is to achieve SDG 3. This included coverage of the UHC Partnership and the UHC 2030 initiative. See a summary report here.
• ‘Global Action Plan for healthy lives and well-being for All’ is a WHO strategy for UHC being carried forward by some of the large multilateral organisations. See a summary report here.
• WHO delivered two briefings on digital technologies in health, one focused mainly on rare diseases. The recent creation in WHO of the new post of Chief Scientist is giving impetus to digital developments. See a summary report here.

A Paralympian from GB with a prosthetic limb from The Leprosy Mission’s Anandaban Hospital in Nepal

GB Paralympian Stef Reid lost her right foot in a boating accident at aged 15. Despite her talent and tenacity seeing her fulfil her dream of becoming a professional sportsperson, she has a calling to encourage and mentor those struggling with disability as well as a heart for the marginalised. So much so that she is currently taken time out of training for Tokyo 2020 to spend time with leprosy patients at The Leprosy Mission’s Anandaban Hospital and experienced first-hand the work of the artificial limb centre.

In order that Stef, a Paralympic long jumper and sprinter, might literally ‘walk in their shoes’ she has had her state-of-the-art prosthetic foot replaced with one made in the hospital’s workshop which makes prosthetic limbs for those who have lost limbs as a result of leprosy.

Stef, who lives and trains in Loughborough with her wheelchair racing husband Brent Lakatos, said the major difference in her ‘new’ foot was the more economic components and materials used.

“A lot of the way they did the casting was really similar to what I experience in the UK, and this is bearing in mind I go to a very amazing private clinic,” she said.

“You can always tell someone knows what they’re doing by the way they interact with your stump, your residual limb. You can see the guys at Anandaban Hospital have done the casting many times before.

“But in many ways it was also really hard this morning and actually after seeing the things they make, I think I almost felt a little bit embarrassed about the leg that I have, in that my leg is so advanced and it does have the best technology.

“It’s amazing to see how great their casting is, they are doing everything right. It’s just that hurdle of prosthetic legs just cost so much and that’s hard to know.”

Stef said her visit had been more rewarding than she could’ve ever imagined, meeting patients like Jyoti, whose home was destroyed in the 2015 earthquakes, which killed 9,000 people in Nepal, and who was diagnosed with leprosy while pregnant with her second child, Mala (now seven months).

She said: “Before I travelled to Nepal I think there was that hesitation of ‘I really hope I’ll be able to communicate well and they are going to understand me.’

“But in the end it didn’t even matter. I had people coming up to me just wanting to hold my hand. We just stood there and didn’t really have to say anything at all!

“It was just an understanding that sometimes life is really hard and we all go through hard things. But there’s still hope at the end of it.

“Just from being here it has become so clear to me that it doesn’t matter where in the world you are or what culture you are from, we all want the same things.

“We all want to provide a safe home for our family and want to be healthy and part of a community.

“But leprosy is a really hard disease on so many fronts and not just because of the health problems it causes.

“But we have seen that sometimes the things that can be most difficult is the loss of community and stigma associated with leprosy.

“There is unfortunately a lot of stigma associated with the disease and one of the most upsetting things is that sometimes people view it as ‘you’ve got this disease because you have done something wrong, you have done something sinful’.

“I can’t even imagine having to deal with that reaction from neighbours; that somehow this is your fault and ‘you deserve this’ which is so untrue.

“I have been so impressed by the response of The Leprosy Mission. It is not a case of ‘we’re going to give you some medication, we are going to offer you some support and some surgery if you need it and then send you on your way’ because that’s not the way to heal people. There’s is a full-on holistic approach.

“They understand that it doesn’t matter if you fix the body, if you don’t change the views of the community; if you don’t ensure that people are independent financially that they are able to take care of each other then it’s just not going to work. This is what long-term care looks like.”

Anandaban Hospital in Nepal was designated a Disaster Response Centre by the Government of Nepal in the wake of the 2015 earthquakes, after it reached out to 18,000 earthquake victims, as well as leading the world’s fight against leprosy. In addition to being the national specialist leprosy referral hospital for Nepal, it is an International Leprosy Training Centre training doctors and surgeons globally and a world-class research centre partnering with the best researchers in its field, including those at the London School of Hygiene and Tropical Medicine.

Reposted with permission from The Leprosy Mission England and Wales – originally published on 1 March 2019 here.

GPZL Zero Leprosy Country Model

In a webinar on 29 May 2019 the Global Partnership for Zero Leprosy (GPZL) has outlined its Zero Leprosy Country Model. This consists of four elements:

1. Zero leprosy toolkit of best practices, which is currently under development through the work of a large number of subject specialist teams including many participants connected to ILEP Members.
2. Zero leprosy helpdesk, which will be developed later in 2019 and will provide practical advice related to the toolkit and implementation of zero leprosy strategies.
3. Country review, through National Partnerships for Zero Leprosy. The first of these, a pilot review on Nepal, will be happening in July at the invitation of the Ministry of Health & Population.
4. Country roadmap to zero leprosy, which would be prepared after the country review using relevant practices from the toolkit and advice, as needed, from the helpdesk.

See here to view the webinar or the slides.

Nominations for the 2019 REACH Awards

The Recognizing Excellence Around Champions of Health (REACH) Awards acknowledge those who have demonstrated extraordinary leadership and commitment in the field of disease elimination.

From boots-on-the-ground innovators to local community health workers, the REACH Awards aim to celebrate critical contributions from those on the front lines of disease elimination. The awards underscore the belief that no one should suffer from preventable diseases and that the ability of people to live a healthy life is a key driver of development, which leads to stable, prosperous societies.

These awards will be presented by His Highness Sheikh Mohamed bin Zayed, Crown Prince of Abu Dhabi, on November 19 at the Reaching the Last Mile Forum in Abu Dhabi, which will convene government officials, bilateral and multilateral aid leaders, global health experts, and industry leaders to share insights and best practice on how to eliminate or eradicate NTDs, Malaria and Polio.The call for nominations for the 2019 REACH Awards was launched at the World Health Assembly in Geneva. The deadline for nominations is 12 July 2019 and more information can be found here.

UN Special Rapporteur on leprosy visits Brazil

Alice Cruz, the UN Special Rapporteur on the elimination of discrimination against persons affected by leprosy and their family members, made her first official visit since the creation of her mandate, to Brazil from 7 to 14 May 2019.

As Brazil has the second highest rate of new cases worldwide, Cruz said she wanted to see what measures the authorities were taking to protect and promote human rights of those affected by leprosy. While in Brazil she visited with the federal and local Governments, civil society organisations, leprosy experts, people affected by leprosy, their families and their representative organisations.

After her trip, Cruz expressed concerns about the number of children affected by leprosy in country and brought attention to the fact that many are denied access to schooling. She urged the federal Government to take steps to ensure that those affected by leprosy are protected from discrimination and stigma based on ignorance about the transmission and treatment of the disease.

“…Persons affected by leprosy continue to experience prejudice, structural and interpersonal discrimination and have limited access to fundamental rights and substantive equality. They still struggle to receive appropriate and comprehensive health care, obtain education and employment, and some are still searching for their children who were forcibly taken in the past,” she said.

“More must be done to ensure early detection, prompt treatment, rehabilitation and reconstructive surgery,” the UN expert said. “An adequate standard of living must be ensured by poverty reduction policies, as well as accessibility and reasonable accommodation at schools and work settings. Many people who are affected have asked the authorities to take decisive steps to protect their rights, including affirmative policies to tackle inequality and reparation measures for physical and psychosocial impairments and disabilities caused as a result of past policies,” she added.

Her final report will be presented to the UN Human Rights Council in June 2020.

See the video about the trip here and see the End of Mission Statement in English here and in Portuguese here.

A Summary of the WHO Leprosy Targets Survey

With 198 respondents, the first survey on indicators around leprosy will be used to develop the WHO’s post-2020 global leprosy strategy, expected to be released in the next year.

In February and March 2019, the Global Partnership for Zero Leprosy (GPZL) distributed a 2030 leprosy targets survey. The results of the survey are available on the GPZL website. In addition to the quantitative results collected by the survey, the GPZL received hundreds of thematic comments. Though these comments were not included in the previous version circulated they are available in the current version. Respondents supported the targets overall; but, emphasised that many are only attainable with active case finding, well-trained healthcare staff, and complete treatment and follow-up. In addition, some targets, while desirable, are not highly measurable. Many respondents offered alternative wording or target suggestions.

The survey was designed with input from ILEP’s Technical Commission and gathered feedback on potential global targets grouped under zero transmission, zero disability and zero discrimination. Its purpose was to help provide input into the World Health Organization’s post-2020 global leprosy strategy and potential global targets for 2030.

Together they are NLR until No Leprosy Remains

Netherlands Leprosy Relief has changed its name and organisational structure, but they continue to push towards a reality where No Leprosy Remains.

Netherlands Leprosy Relief has worked towards a world without leprosy over the past 50 years. As their ambition is to continue until No Leprosy Remains, they are now making a significant organisational change. In 2018 NLR started transforming into an alliance of locally embedded NGOs to better serve their mission to promote and support the health, ability, and full inclusion in society of persons affected by leprosy.

“NLR has been focused on innovation for many years and with this organisational change we ensure that we can continue to focus on introducing and implementing inspiring breakthroughs,” said Jan van Berkel in their official statement.

And the new way of working, as an alliance, comes with a new name: Netherlands Leprosy Relief continues as NLR with a different meaning — No Leprosy Remains. The first members of this alliance are NLR India, NLR Indonesia, NLR Mozambique, NLR Nepal, NHR Brasil and Leprastichting (NLR Netherlands). They have a shared track-record as teams who keep going until breakthroughs are implemented. Together they will focus on enabling research and driving evidence-based innovations. NLR envisions a growing alliance of members who share their mission. For more information about the alliance formation and partnership opportunities visit here.

Report from IDDC

The International Disability and Development Consortium (IDDC) General Assembly this month focused on Leaving No One Behind: ensuring persons with disabilities and other marginalised groups are included in development cooperation.

ILEP and some of its Member associations are also members of the International Disability and Development Consortium (IDDC). Its General Assembly included a workshop, organised by CBM, on Leaving No One Behind: ensuring persons with disabilities and other marginalised groups are included in development cooperation.

Leave No One Behind is a fundamental principle of the 2030 Agenda for Sustainable Development and the SDGs. Although the principle is referred to often, there is a lack of binding strategies and measures to ensure it happens. IDDC groups worked on the application of Leave No One Behind in global partnerships, access to health, education and employment, and decent work. We will later share final versions of these short documents with Members, as they are a useful aid in advocacy and policy thinking for leprosy, as well as for disability.

A short overall cross-cutting document was agreed to. This document argues that, four years into the SDGs, too little is being done to ensure the Leave No One Behind principle is actually being implemented. It can be seen here. This also includes brief statements on participation by persons affected, accessibility, accountability for Leave No One Behind, disability-inclusive financing, and the collection of disaggregated data.

Leprosy at Novartis Foundation

Since 1 May 2019 the leprosy work at the Novartis Foundation has been reallocated and integrated into the new Global Health & Corporate Responsibility organisation of Novartis.

For over 30 years, Novartis and the Novartis Foundation have been working with partners like the Global Partnership for Zero Leprosy (GPZL) to eliminate leprosy and continue their long-standing commitment to exploring innovative ways to interrupt the transmission of the disease.

The reorganisation of the work on leprosy has unified the multi-drug therapy supply chain (already hosted by Novartis) and the support to the GPZL.

Further work on the diagnostic test for leprosy will be taken on by the Global Drug Development unit for NTDs.

In 2019, the Foundation will finalise the LPEP initiative and its dissemination, as well as the proof of concept of the AI powered digital tool to accelerate leprosy diagnosis, in partnership with Microsoft and Fiocruz.

“We are extremely grateful for the nice collaboration we had together over the past years and very much look forward to hearing more about the great work the Partnership has set out to achieve in the future,” said Ann Aerts, the Head Novartis Foundation, in an email.

Innovation – A big part of the solution

The World Health Organization (WHO) and the United Nations (UN) have said that disease prevention and treatment will help to reduce poverty and economic disparity. According to Dr Paul Saunderson, the Medical Director at American Leprosy Missions and chair of ILEP’s Technical Commission, understanding the small details could make all of the difference to the way leprosy is seen and treated.

“One thing I’ve noticed is that there are a lot of small things that are misunderstood about leprosy,” said Dr Saunderson. “Many other neglected tropical diseases (NTDs), are quite common where they occur, so there may be a lot of knowledge around them, such as the broad data in a country, etc. But if you are trying to map leprosy which is generally quite rare, you are doing so along with everything from trachoma, Buruli ulcer, cutaneous leishmaniasis to scabies, yaws or even tuberculosis. There is now an interest in case detection and management as a group, which could allow for better tracking of leprosy cases.”

Many NTD surveys do not need intensive individual data and can estimate numbers in a community, based on sample surveys. This is not the case with leprosy, as the cases are not evenly spread through the community but occur in clusters. In 2009, M.I. Bakker, et al. concluded that a geographical information system (GIS) was necessary to research, manage, have public health focussed interventions, plan and monitor control programmes, and have effective advocacy programmes at the national or sub-national level.

Dr Saunderson emphasised that surveying for leprosy can be time intensive and expensive: “We map based on the patients that we know, and these patients tend to be clustered and unevenly distributed. Historically, the data has been inaccurate for a number of reasons including the fact that it is one of the world’s most stigmatised diseases. Because of their disabilities, people who are affected by leprosy can be shunned, discriminated against and denied their human rights. This stigma affects their physical, psychological, social, and economic security. It is often the financial burden that hurts the most and so the affected who are treated early enough may never admit to having had leprosy.

Regardless of the cost or the reality that getting accurate numbers would be difficult, donors rely on data and mapping to support their health programme funding. But the quality and the scope of the data can be less than ideal, as leprosy can be hidden and sporadically found in a community.

“We have to present our data in different ways,” said Dr Saunderson. If an NGO has people affected by leprosy involved, then alongside whatever data they have they can present a series of anecdotes or experiences. “This would not show the range that better data would, so wouldn’t be perfect from the start, but some organisations are ready to start with something, showing some way of measuring progress.”

When talking about data gathering and organisations that do so, Dr Saunderson said that data was gathered and managed in different ways. This means that you may not be able to compare numbers gathered by one organisation to another. These same organisations often also deal with other diseases, so leprosy gets dropped off the radar because it is paired with a bigger problem. Money from donors for NTDs (or other diseases that leprosy is paired with) is not secure, so the money for one can be at the expense of the other, and that is something that Dr Saunderson would like to avoid.

And because leprosy tends to fall off the radar, Dr Saunderson worries that the top endemic countries won’t ever make a concerted effort to make it a focussed part of the health agenda.

The local health agenda, according to the WHO, should include health system strengthening and improving services at the local level. Though not considered particularly innovative, better services would bring more attention to leprosy case detection.

What is innovative, according to Dr Saunderson, is the ongoing clinical trials of LepVax, the world’s first leprosy-specific vaccine. Dr Saunderson hopes to see clinical trials in Brazil and India by 2020 but they will likely take five or six years. Over the next 10 years he hopes that the vaccine will be widely deployed. Along with the vaccine, Dr Saunderson noted that post-exposure prophylaxis (PEP) has had very positive results at minimising transmission by reducing the number of new cases. By having both accessible, there would be a longer term advantage.

“Innovation is only a part of the solution,” said Dr Saunderson. “But it could be a very big part.”