World NTD Day 2022: Care for the neglected—How CDC helps those with lymphatic filariasis

Reposted from the U.S. Centers for Disease Control and Prevention (CDC). Read the original here.

World NTD Day 2022: Care for the neglected—How CDC helps those with lymphatic filariasis

Historically, people afflicted with neglected tropical diseases (NTDs) like trachoma, onchocerciasis, and lymphatic filariasis (LF) have been shunned or ignored by the world, their countries, and sometimes even their communities. More recently, thanks to growing global awareness of the burden NTDs impose on millions of people around the world, efforts to prevent these disabling diseases have expanded.

A woman in Mali with lymphatic filariasis washes her leg to help care for her condition.

Mia has suffered from the painful effects of lymphatic filariasis (LF) for decades. Morbidity management and disability prevention (MMDP) trainings have helped her learn how to better manage her symptoms. Credit: Caitlin Worrell/CDC

CDC’s Division of Parasitic Diseases and Malaria (DPDM) collaborates with the US Agency for International Development (USAID)’s NTD Program, in-country partners, and other global health organizations to leverage $26 billion in donated drugs to accelerate NTD elimination.

However, prevention of NTDs is just one piece of the global health puzzle: millions already suffer from the debilitating effects of NTDs and urgently need treatment and care. These men and women, for whom prevention is no longer an option, represent the forgotten amongst the neglected.

In Kolondiéba, Mali, a 47-year-old mother of eight named Mia has suffered with the painful symptoms of lymphatic filariasis (LF) for more than 30 years. Because of her LF infection, Mia’s lymphatic system doesn’t function properly. Fluid build-up has led to aching, swollen legs which make her more likely to experience acute attacks—painful and debilitating episodes of skin infection that leave her bed-ridden and her children without care. If left unmanaged, the swelling in her legs will persist and worsen, the acute attacks will increase, and her ability to work or care for her kids will be imperiled.

In some of the most economically disenfranchised places in the world, places like rural southwestern Mali, the consequences of NTDs harm not just individuals, but also their families and their communities, maintaining a cycle of poverty that has endured for generations.

On World NTD Day 2022, CDC highlights what we and our partners are doing to reduce health inequities and help those like Mia who have been infected with LF and are living through disability, stigma, and pain.

Global burden of lymphatic filariasis

Lymphatic filariasis (LF), often known as elephantiasis, is a parasitic disease caused by microscopic, thread-like worms spread by the bite of an infected mosquito. Globally, LF affects more than 50 million people in Asia, Africa, the Western Pacific, and parts of the Caribbean and South America.¹

Some people with LF develop lymphedema (fluid collection and swelling which most often affects the legs, but can also occur in the arms, breasts, and genitalia) or, in men, a swelling of the scrotum called hydrocele. These conditions often mean lifelong severe pain, disability, and discrimination. Worldwide, an estimated 19 million men suffer from hydrocele and 17 million men and women struggle with lymphedema.²

In 2000, the World Health Organization (WHO) launched the Global Programme to Eliminate Lymphatic Filariasis. The recommended strategy has the following two components:

To stop the spread of infection (interrupting transmission)
To alleviate the suffering of affected populations (controlling morbidity)³

Halting LF transmission is at the heart of the global LF elimination program, but the second component is equally vital.

How CDC and its partners help the millions struggling with LF

For years, CDC has worked (and continues to work) with partners to eliminate new LF infections, including by supporting mass drug administration (MDA) campaigns in Haiti and American Samoa. However, in addition to these prevention activities, CDC also develops tools and guidance, generates data, and administers trainings to help people who already have LF.

A group of individuals learning how to manage lymphedema and see a demonstration of proper limb care washing.

Trainings, like this one in Kerala, India, help health professionals learn strategies for taking care of symptoms of lymphedema, a consequence of lymphatic filariasis (LF), and share experiences caring for people with LF in their countries. Here, training participants from Indonesia and Somalia apply the lymphedema management strategies learned from experts at T.D. Medical College. Credit: Suma Krishnasastry/Filariasis Research Center, India

Supporting and bolstering systems of healthcare for those with LF—known as morbidity management and disability prevention (MMDP)—is an essential hallmark of CDC’s LF program.

“Since the beginning of CDC’s LF program, we have realized that we can prevent future generations from suffering the consequence of this disease without losing sight of those who already suffer from its debilitating impacts,” says Caitlin Worrell, a DPDM epidemiologist. “With such a large, global focus on prevention, those who already have diseases can sometimes be forgotten. It’s definitely a big challenge to ensure everyone is cared for.”

For years, Worrell and her team worked with USAID, WHO, and others on a WHO-led effort to develop new evidence-based tools for strategies to improve the lives of those who suffer from lymphedema and hydrocele. This updated guidance, published in 2021—Lymphatic filariasis: managing morbidity and preventing disability: an aide-mémoire for national programme managersexternal icon—gives countries with endemic LF a toolkit for carrying out MMDP programs that will impact the lives of those who suffer long-term consequences of LF. Some of the strategies—wearing shoes that fit well or hygiene regimens for cleaning affected areas—sound straightforward, but they are challenging in practice. Other strategies, like management of acute attacks, require trainings and targeted public health communications. The key is making sure healthcare workers and infected individuals know about these strategies. “Ultimately, our goal is to provide the tools directly to persons affected by lymphedema so they can be empowered to take charge of their health,” explains Worrell. “It requires a lifetime commitment.”

For the past several years, CDC has worked with partners from the Government T.D. Medical College Hospital in Kerala, India; WHO; and other partners to develop and deliver five-day MMDP trainings for clinicians and countries’ NTDs program staff. These trainings were based on the preferred practices for managing lymphedema outlined in the updated guidance and, as of January 2022, have been administered in three WHO regions to representatives from more than 25 countries.

Didier Bakajika, a medical officer for onchocerciasis and LF from WHO’s Expanded Special Project for Elimination of NTDs, says that since the launch of MMDP trainings in the WHO Africa region, the number of countries reporting lymphedema and hydrocele has grown from 14 in 2017 to 26 in 2020. “A lot still need to be done in the region,” he says.

Helping to close the health inequity gap

The benefits of successful MMDP programs are multi-layered. At the individual level, MMDP programs reduce the number and severity of acute attacks, help the person’s limb to be healthier, and help people feel better and be more active. At the community level, MMDP programs have been shown to actually increase participation in preventative MDA campaigns because of heightened awareness in the community of the threat posed by LF.⁴ MMDP programs are also cost effective to set up and run: an analysis in India found that per-person economic savings are 130 times the per-person cost to implement the program.⁵

“The essential package of care … when practiced regularly, will definitely reduce the chance of acute attacks which reduces suffering also,” says Professor Suma Krishnasastry, director of the Filariasis Research Unit at Government T.D. Medical College Hospital. “The patient’s general condition improves, they will be able to go for work and earn a better living, and the quality of life improves. The patients with this new gained knowledge form self-help groups in their community. This has shown to help reduce stigma to a great extent.”

“People with filarial lymphedema and hydrocele not only feel socially stigmatized but suffer economically,” notes Emily Toubali, the LF Technical Advisor in USAID’s NTD Division. “Bringing care and treatment to those who have morbidity associated with LF means that the most marginalized are being reached by the health system with a set of interventions that directly improve their quality of life.”

“Many of the people we encounter feel trapped in a cycle of poverty and disability,” explains Worrell. “We have a commitment to these people. We have a commitment to health equity.”

Several years ago, Mia participated in an MMDP program offered by Mali’s Ministry of Health with funding from the Izumi Foundationexternal icon and technical expertise from CDC and CDC Foundationexternal icon. There, she learned some essential lymphedema management practices such as daily leg-washing, exercises, and other specific lymphedema management techniques. Since going through the training, her acute episodes have dwindled and the pain in her legs has become manageable. She’s proud of how she’s able to care for her own health again and says that since she no longer feels burdened by these attacks, she is able to focus on her children again.

Read more about how DPDM addresses the threat of parasitic diseases and other NTDs like LF in our Strategic Priorities 2021–2025pdf icon.