44 Reasons to Reauthorize PEPFAR: Anecdotes from African Communities, March 2023-August 2023

Introduction:

The President’s Emergency Plan for AIDS Relief (PEPFAR) is the U.S. government’s global effort to combat HIV. It is the largest global health program in the world devoted to a single disease. Others like it include the Jimmy Carter Foundation’s action against Guinea Worm. First proposed by President George W. Bush in 2003, PEPFAR funds are used for U.S. bilateral HIV response, as well as participation in the Global Fund to Fight AIDS, Tuberculosis and Malaria (Global Fund) and bilateral assistance for tuberculosis (TB) and malaria programs. PEPFAR’s current authorizing legislation goes through FY 2023, which ends on September 30, 2023. As Congress and policymakers consider a fourth reauthorization of PEPFAR, there is fear that PEPFAR may be no more. The objective of this research was to gather voices that can be used to convince Congress to reauthorize PEPFAR.

Method:

We used Interviews, story-telling and conducting conversations on the extent PEPFAR has influenced HIV-related response and care in select communities in Uganda.  This paper characterizes scenarios before and after PEPFAR.

Results:

"Before PEPFAR, all that could be done for bedridden/bedbound persons living with HIV, was to give them herbal medicines made hastily from leaves picked up from a backyard garden. It was the best we could do. Hard times they were!"

"Before PEPFAR, we used to walk miles and miles to go to the 'nearest' hospital to get medicines for Opportunistic Infections. Medicine stock-outs were common!"

"Before PEPFAR, there were more bedridden/bedbound persons living with HIV, in many households. We used to make straw bets on which household would lose their member or members first. Terrible times indeed!"

"Before PEPFAR, all that we could talk about were sad stories of loss, fear and desolation. Scary times!"

"Before PEPFAR, parents endured and lived under the knowledge that AIDS was a death sentence! Those were hard times for being a parent!"

"Before PEPFAR, children had to be pulled out of school to care for their parents! Those were hard times for being a child!"

"Before PEPFAR, grandparents became the surviving next-of-kins and breadwinners. They faced multiple hardships including a lack of policy to care for grandparents caring for grandchildren."

“Before PEPFAR, orphans and other children affected by, or vulnerable to, HIV were left to fend for themselves since their parents or benefactors had passed away including the extended families they would have sought refuge. It was a difficult time to live.”

“Before PEPFAR, we used to go to the clinic to treat malaria and then go back to the same clinic the following day or week to have one's cough checked. Comprehensive and integrated care of HIV, malaria, and TB was unheard of. Times were hard and this caused expense hardships!”

“Before PEPFAR, we never thought that people would live longer with HIV. We assumed that older persons with gray hair were not sexually active. But now, the concept of vertical or single disease gave way to horizontal health systems and structures which were made stronger and more sustainable at different levels. Interesting innovations indeed!”

“Before PEPFAR, we didn’t have the financial wherewithal to integrate immunization, nutrition, livelihood projects, gender equity and social-transformative interventions systemically for better quality of life results, good health and wellbeing. The outcome is mind blowing.”

“Before PEPFAR, we had a stigmatizing language that promoted fear and discrimination which affected good health and wellbeing. It was hard to treat people living with HIV with respect.”

“Before PEPFAR, we could say such words like victim, promiscuous and infected and get away with it. Yet we would turn around and go to prayer places knowing we are the holy ones!”

“Before PEPFAR, the Diagnostic lumbar puncture in People living with HIV was an expensive testing modality of choice in those days. We now have cheaper and more non-invasive testing options.”

“Before PEPFAR, we used to spend long hours in lines and did not know that one day there would be a type of medicine known as HIV medicine. It is still a miracle!”

“Before PEPFAR, we did not know that we shall drop such words like viral load, low CD4 cells and infection level without the need to explain oneself.  Now we are able to use such words in day-today conversations thus reducing aversion and stigma against HIV or any disease. “

“Before PEPFAR, we could not connect the need for HIV medicines, one’s viral load low and CD4 cells.  This connection became a catalytic motivation that spurred self-care agency in many and hence longevity. Now parents are around to see their children grow.”

“Before PEPFAR, we could not connect the need for HIV medicines, one’s viral load low and CD4 cells.  This connection became a catalytic motivation that spurred self-care agency in many and hence longevity. Now children are no longer parentless.”

“Before PEPFAR, we never had health education sessions that cautioned one not to skip doses giving HIV the chance to multiply rapidly.”

“Before PEPFAR, we did not get information about HIV mutations and how these could develop while a person is taking different medicines which can lead to drug-resistant HIV. The health-providers were always in a hurry to work through the long lines before them.”

“Before PEPFAR, we did not know what to do once drug resistance developed. One was kept in hospital under management for months and this meant spending so much money. Imagine how many families faced cash-related hardships.”

“Before PEPFAR, we knew that once any medicines that previously controlled a person's HIV were no longer effective that was it, death! Many people died because they lost hope!”

“Before PEPFAR, we knew about Virologic failure in form of repeated detectable viraemia of around >400/mL with treatment. In this situation we never had alternatives after a complete and immediate evaluation including changes to new antiretroviral agents.”

“Before PEPFAR, it was not easy to address immunologic failure-  when CD4 count fails to increase by 25-50/μL or a return to the baseline CD4 before treatment.  But now there are means and interventions.”

“Before PEPFAR, we did not know that antiretroviral treatment would be available to people who were eligible for it. HIV medicines worked wonders.”

“Before PEPFAR, complete suppression of viral replication was unheard of. There are benefits of ARVs including forestalling the development of resistance and damage to the immune system fostering immune recovery.”

“Before PEPFAR, we did know of an HIV care watershed but had no financial muscle to see it through. Complete suppression of viral replication by ARVs was unheard of. There are benefits of ARVs including forestalling the development of resistance and damage to the immune system fostering immune recovery.”

“Before PEPFAR, we knew of many care approaches but they remained in textbooks. Presently, there is a whole range of approaches and algorithms from classification of failure to characterizing prevention continuum.”

“Before PEPFAR, such terms like Viral Load (VL), CD4 count, Resistance test, Therapeutic Drug Monitoring (TDM), Replicative capacity (RC) and scenarios were not in common usage. We are now able to effectively care for people living with HIV.”

“Before PEPFAR, people living with HIV had the desire to live longer but did not have the tools to accompany the aspiration. PEPFAR brought the options that prolonged life.”

“Before PEPFAR, HIV would reproduce and replicate inside the body without any effective medicines. This led to slimming, damage to the immune system and the body becoming extremely vulnerable to other diseases. We do not want to go back to those days.”

“Before PEPFAR, we did not have HIV treatment guidelines targeting specific scenarios. With PEPFAR came the options that promote inclusivity and prolonged life.”

“Before PEPFAR, who knew we would confidently say, ‘Antiretroviral therapy is recommended for all people with HIV to reduce morbidity and mortality and to prevent the transmission of HIV to others,’ and walk the talk.”

Before PEPFAR, we didn’t think of statements like, ‘Antiretroviral therapy should be initiated as soon as possible after a person is diagnosed. This increases the uptake of antiretrovirals and linkage to care, decreases an individual’s time to viral suppression and improves the rate of virologic suppression among people living with HIV.’”

“Before PEPFAR, it was hard to dedicate funds for education. Yet, educating individuals diagnosed with HIV on the benefits and risks regarding antiretroviral therapy and deploying strategies to optimize care engagement and treatment adherence provides mental preparation and readiness to engage in care.”

“Before PEPFAR, there were no logistics to engage in community-based outreaches or medical camps that brought health services nearer to people. PEPFAR contributed to demand creation and service delivery. PEPFAR has made the peripherals livable communities.”

“Before PEPFAR, grandparents who lost their children had thought the same demise would befall the grandchildren born and living with HIV. But, thanks to PEPFAR this is not the case. Grandparents are happy that their grandchildren are alive!”

“Before PEPFAR, few knew about the risk factors of HIV that occur in people with low CD4 count such as tuberculosis. But now there are referral care continuum mechanisms. Thanks to PEPFAR.”

“Before PEPFAR, few knew about the risk factors of HIV that occur in people with low CD4 count such as non-Hodgkin’s lymphoma. But now there are referral care continuum mechanisms. Thanks to PEPFAR.”

“Before PEPFAR few knew about the risk factors of HIV that occur in people with low CD4 count such as Kaposi’s Sarcoma and other cancers. But now there are referral care continuum mechanisms. Thanks to PEPFAR.”

“Before PEPFAR, few knew about the risk factors of HIV that occur in people with low CD4 count such as Peripheral neuropathy. But now there are referral care continuum mechanisms. Thanks to PEPFAR.”

“Before PEPFAR, families sold household assets to buy herbal medicines in order to survive. But this did not ease the health deterioration and it left many households impoverished.”

“Before PEPFAR, hoax therapies and false miracle cures cropped up on a regular basis including that of Nannyonga of Lutunku in Ssembabule District who sold soil purporting it to be a miracle cure. PEPFAR regularized health systems, structures and oversight.”

“Before PEPFAR, few knew about the risk factors of HIV that occur in people with low CD4 count such as pre-cancers caused by Human Papilloma Virus (HPV).”

“Before PEPFAR, few knew about the risk factors of HIV that occur in people with low CD4 count such as mental incapacitation such as difficulty thinking and reasoning (neurocognitive problems).”

 Conclusion:

PEPFAR has political, structural, economic, cultural, civic, bio-medical, social, environmental, mental, physical and legal enabling and responsive benefits not only for the USA but for the entire world. We call upon its reauthorization because it has brought routine that fosters good health and wellbeing for many.