Cutting Through the Red Tape of HIV/AIDS Research
HIV remains a heavily stigmatized and misunderstood condition in the United States. But, thanks to medical advancements and acknowledgments from the scientific community, the facts tell us that people living with HIV who adhere to standardized treatment protocols pose no threat to public health.
Unfortunately, false accusations to the contrary—despite being devoid of supportive science—still persist.
However, it is important to celebrate the scientific revelations that have eased the burden of living with HIV so far. This includes the research behind the U=U campaign, which has sought to make common knowledge of the fact that a person with an undetectable viral load cannot transmit the virus to an HIV-negative person.
Doctors and infectious disease experts have known reduced viral load counts equate to a reduced chance of HV transmission since the mid-'90s, but the definitive statement supporting U=U was not issued until 2016, highlighting the uphill battle HIV research climbs in the face of public opinion.
How research helps heal
"People who had been diagnosed as HIV-positive, you know, they kind of lived sheltered lives. They were afraid to interact with other people because of stigma and because of discrimination," said Fran Lawless, director of the Office of Health Policy and AIDS Funding for the city of New Orleans. "What U=U does is it opens up a whole new world for them. Their own internalized stigma dissipates because they know, 'I cannot transmit this virus to anyone else.'"
Fear of HIV and AIDS transmission has, unfortunately, been the driving force behind the public perception of the illnesses since the beginning of their prominence in the United States during the 1980s. Even though doctors were telling HIV patients about the benefits of maintaining an undetectable viral load for years prior to the consensus statement issued in 2016, the fearmongering attitudes regarding HIV and AIDS prevented the information from being effectively disseminated to the public until ample research had been collected and sponsored by various agencies, organizations and individuals around the country.
Five years after the consensus statement regarding U=U was released, the idea is now readily accepted as an indisputable fact among HIV prevention specialists, physicians and just about everyone belonging to communities or populations directly impacted by HIV and the AIDS crisis. While a cure for HIV remains elusive, the combined benefit resulting from modern medication options along with the science supporting U=U is often regarded as, for now, the next best thing.
"I wish the general public could understand this," Lawless said.
The flaw in our design
Stigma and prejudice are two of the biggest obstacles to HIV research, but bureaucracy and budgeting could be considered next in line.
"The U.S. system is based on the dollar," said Christine Brennan, Ph.D., a nurse practitioner and associate professor at Louisiana State University with almost three decades of experience in HIV care and research. "Anything that does not result in increased income for some entity is going to have more difficulty finding funding to do it."
And, while we know the pharmaceutical industry is a rich source of revenue, Brennan said the research efforts of some major pharmaceutical companies may be undermined by profit incentives.
"Those companies want to get their products to market as fast as possible, so they are going to recruit the easiest patients that they possibly can get to. So, it's going to be the patients that are most readily available. And, there are more readily available gay, white men with HIV than any other population."
While a cure for HIV remains elusive, the combined benefit resulting from modern medication options along with the science supporting U=U is often regarded as, for now, the next best thing.
Brennan clarified that this lowest-common-denominator approach to gathering research subjects and participants often means marginalized communities, such as people of color living with HIV, are often overlooked when it comes to large-scale initiatives. She added that these same groups, and others, are often distrusting of medical researchers and therefore less likely to voluntarily participate in research efforts.
She also pointed out that women with HIV are frequently overlooked by pharmaceutical companies when it comes to research, partially due to the added cost and complications of considering pregnancy issues that might arise from HIV and/or HIV medications.
"Women don't get recruited into studies because they have a different level of involvement that's required," she said.
Admittedly, this also has to do with the simple fact that there are fewer potential participants available from HIV-infected populations than those available from the populations that primarily include men who have sex with men. This brings us to the subtle and not-so-subtle aspects of budgetary allocations for HIV research on state and federal stages.
The justification of saving lives
It's interesting to note the fiscal year federal funding to fight HIV/AIDS in 1982 included just a few hundred thousand dollars to combat the crisis. Fast-forward to 2020, and you'll find the CARES act provided more than $2 trillion of federal money to address the coronavirus crisis.
Of course, these are two very different points in American history and two equally different illnesses. However, it's arguable the slow acceptance of HIV/AIDS as a "real" threat to American health contributed to the comparatively quick acknowledgment that COVID-19 required fast and effective scientific intervention and research. Less debatable is the fact that vaccine development efforts surrounding the coronavirus pivoted off of cumulative research conducted over the 30-year history of the fight against HIV and AIDS.
According to research released earlier this year, the effort to address COVID-19 is directly threatening gains against the HIV epidemic, including the U.S. program Ending the HIV Epidemic. These stark contrasts and conflicting interests speak to the immutable fact that HIV is not given the public attention required to permanently end the epidemic, despite the fact an HIV vaccine and cure remain elusive, whereas the coronavirus is both curable and preventable by way of existing vaccines.
HIV/AIDS research has relied on inconsistent and ever-changing budgetary allotments throughout the years. The Office of AIDS Research is required to release a dense and detailed Congressional Justification document every year explaining the use of funds in precise terms. This justification document is unique when compared to similar documents related to other infectious diseases. In general, HIV research is evaluated under intense scrutiny and often regarded as nonessential at various state and federal levels.
Because of these past and current challenges to research relating to the care and prevention of HIV, the virus will likely continue to impact lives around the world, both directly and indirectly, "well into the next century," according to the National Institutes of Health and their annual document. The longer it takes to develop HIV vaccines and a cure (which is often referred to as the "holy grail" of developments relating to the virus), the longer we will see unnecessary death and suffering among untreated HIV/AIDS patients.
"HIV care is so easy," said Christine Brennan. Unfortunately, the same can't be said when it comes to maintaining the relevance of HIV research in the public eye.
