On January 31st, 2013, a team comprised of leading cure scientists and AIDS support group leaders met with Congressman Henry Waxman (CA-33) to address a cure for HIV and the problem of inadequate funding. In attendance were (L to R) Dr. Ronald Mitsuyasu, UCLA Center for Clinical AIDS Research and Education; Dr. Paula Cannon, USC Keck School of Medicine; Phil Curtis, AIDS Project LA Director of Government Affairs; Congressman Henry Waxman; Gerald Gerash, cure activist and lawyer; David O’Dell, long term HIV/AIDS patient and activist; Kevin Kurth, Executive Director of Being Alive; and Michael Weinstein, President and Founder of AIDS Healthcare Foundation.
Gerald Gerash, who organized the meeting and a longtime gay rights advocate whose recent passion has turned toward a cure for HIV/AIDS, led off with an introductory overview. He noted that the National Institutes of Health (NIH) allocates a mere 3% of its 3 billion dollar HIV research budget to cure research. He further stated that, in light of the amazing scientific advances towards a cure, this paltry amount needs to be markedly increased.
In spite of the HIV treatment medications, he continued, only 28% of the 1.1 million in the U.S. with HIV have an undetectable amount of HIV in their blood. However, HIV is still hiding out in cells in other parts of their bodies, impenetrable to the treatment medication. And even the 28% are saddled with side effects and can die at a higher rate than non-HIV people. Clearly, he concluded, the present methods “to end AIDS” are not working. He hoped that Mr. Waxman, with his past leadership on AIDS issues, such as the Ryan White Care Act will step forward and provide the vision he is so capable of in the march to a cure for HIV/AIDS.
Next David O’Dell, a former successful documentary film maker with National Geographic, reported on his 27-year battle with HIV/AIDS. Although within the 28% group, his many ongoing side effects of medications and complications from the HIV, including a stroke and extreme neuropathy, due to general inflammation caused by HIV and the treatment medications themselves have resulted in disability requiring governmental financial assistance. This was gripping testimony about a stark life with what is popularly called a “chronic controllable disease” or the “new HIV normal.”
The scientists, Drs. Mitsuyasu and Cannon, discussed their ongoing, extraordinary and promising efforts in the area of anti-HIV gene and stem cell therapy to knock out the CCR5 receptor or “hook” onto which the HIV virus latches in order to enter the T- cell. Inspired by “the Berlin patient,” Timothy Brown, who was cured of HIV by the use of blood stem cells from a person who was born with T-cells lacking CCR5, they hope to duplicate his result in a safe way for people with HIV. Their novel approaches are at the forefront of AIDS cure research, one already at the early stage of human testing.
Turning to Mr. Waxman, Dr. Cannon pointed out how their work and the promising research of other scientists leading to a cure, desperately need more funding.
Michael Weinstein of AHF (the largest HIV medical organization in the world and recently returned from his work in Africa) provided statistical information regarding the number of HIV/AIDS cases in the United States (1.1 million). Mr. Weinstein noted that the cost to provide medicine and healthcare to the 50,000 individuals who each year test positive for HIV exceeds $600,000 per patient over the course of their lifetimes, or a price tag of 30 billion dollars added to the crisis every year. In addition to agreeing that NIH should drastically increase their budget for cure research, he asked why so many very promising HIV cure research proposals are rejected for funding. Paula Cannon’s research, for example, is funded by the California Institute of Regenerative Medicine (Prop 71).
At the end of the presentations, Mr. Waxman stated that he supports the campaign for a cure of HIV. He agreed with the Himes/Lee Bill, “Cure for AIDS Act,” which authorizes $100 million for cure research over five years. Mr. Waxman said he will examine the Bill and consider cosponsoring it.
Mr. Waxman also will ask NIH to rethink the issue of funding for cure research. Among the issues he will raise: why funding for cure research is so limited, why cure research isn’t a line item of NIH, and NIH’s protocols in accepting cure research applications. Mr. Waxman also raised the general idea for advocates for a cure to approach private philanthropy (such as the Bill and Melinda Gates Foundation) for cure research funding. Mr. Waxman asked that each person present at the meeting write a letter to him stating all his or her concerns
These efforts by a knowledgeable and highly experienced group of scientists and HIV activists, along with Congressman Waxman’s receptivity and agreement to add his efforts for the cause, brings hope to the millions of people worldwide with HIV/AIDS, and who are desperate for a cure.