The epidemic has changed so much since I've been involved in the AIDS crisis. When I was first diagnosed, HIV really was a death sentence. I remember my first doctor telling me that I could live as long as 10 years. I smiled and walked out of her office happy. I made it to my car before I realized that she had just told me I'd be dead before I was 38 -- if I was lucky!
The waiting room of my first clinic was like a party every 3 months. We all came on the same day and many of us already knew each other from school or the street or drug programs or elsewhere. We'd go from one person to the next, one group of familiar faces to the next, until our names were called and then we would do our triage and blood draws and wait in the back to see our doctors together. After about a year I noticed the crowd getting smaller and smaller each time. Each visit became less and less of a party atmosphere and more of a telling session of who didn't survive the last 3 months.
The phone rang immediately following approval of the first protease inhibitor with my then boyfriend's doctor telling him to go to the pharmacy. There was a new drug approved and there was a prescription waiting. It seemed like only days, though it had to be longer, as I watched him go from laying in bed all day to being up and feeling great. It was a miracle.
It was a miracle that had its drawbacks. Whereas HAART saved and saves so many lives and revolutionized HIV treatment and care, it also hindered it. We had been dying and fighting for our lives. There was an urgency that propelled action in the AIDS crisis forward. HAART saved lives but slowed that action to a crawl. Drug companies made 'me-too' drugs (drugs similar to the ones we already had) and searched for ARTs with better and better resistance profiles and easier dosing, abandoning the search for a 'cure' which quickly became a dirty word. They focused on making HIV a continually profitable 'chronic manageable disease' through HAART, even though our bodies and bank accounts quickly told us years and years on HAART was not manageable.
Idiotic news outlets declared AIDS was over and Magic Johnson was cured and so many people bought the party line. The attention HIV garnered, as well as the funding, continued and continues to decrease year after year.
Activism all but died out. The Monday night ACT UP NY meetings at the Gay and Lesbian Center, as well as the demonstrations, became smaller and smaller until only a few die-hards remained; and then even most of us gave up as the tiny meetings became less and less focused on the issues that had once ignited heated discussions, passionate pleas, tears and angry voices.
In living we learned how to live with HIV and AIDS, how to accept what really is not acceptable. If HAART saved us all, then it would be acceptable. IT DOES NOT. Twenty to 40 percent of people who need HAART have no access to treatment. And among those of us who do, we are living with and dying from complications like cardiovascular disease, liver disease, diabetes, kidney disease, etc. How many more experts need to say that we will never be able to make enough HIV antivirals for everyone who needs them before we start to listen?!
Recent data that showed a 96 percent decrease in HIV transmission for people on HAART who initiated therapy at over 350 CD4 cells is extremely encouraging news and should be considered as a means of prevention as well as treatment. It is another tool in preventing infections but not, as some groups have contended, the answer to ending the AIDS pandemic.
Efforts to reduce transmission, as well as research for an effective preventative vaccine, are highly essential and must be explored, supported and utilized to contribute to ending the AIDS crisis. But prevention techniques, no matter how effective, will never be utilized by everyone. Just look at the condom. We know condoms prevent infection but a large percentage of people, positive and negative, simply do not use them for one reason or another.
A vaccine is a long ways away. Although it should in no way affect the research and development of a vaccine or the desire for one to be developed, it is important to point out that if a preventive vaccine is found while there is no cure for HIV, it will essentially equate to a death warrant for those of us already infected. If and when a preventive vaccine is discovered, the 34 million+ of us already infected will no longer be a viable, growing market for pharmaceutical companies, and thus there will not be anymore money spent on researching and developing new drugs for us. What we have at that time will be the only therapeutic options we will ever have. The only true way to end the AIDS crisis is either a functional cure or to eradicate HIV.
We are at a crossroads in the AIDS pandemic. The search for a cure, both focused on eradication and a functional cure, has gained much momentum led by the scientific community and a small number of activists and advocates. Every day we learn more and more about how HIV works and how we can stop it. And we are getting closer. One person has already been cured and although it is not plausible to follow the treatment course that cured him, we have learned much from it. Sounds great? Well here's the problem, or shall I say the biggest problem. There's no money for the research needed to get us there, there being a cure.
According to the AIDS Policy Project, the NIH spends only 3 percent of the HIV research budget on a cure. It turns down 80 percent of applications for new research due to a lack of funds. Private industry is in much worse shape. There is little incentive or assistance in novel research for biotech companies, the ones who normally take a drug from petri dish to late phase II or phase III development, where they are often bought by pharmaceutical companies who attempt to complete clinical trials and seek regulatory approval for the drug to be used by the public. The entire process takes hundreds of millions of dollars. Most biotech companies exist on private funding or profits from stock prices. Problem is, the large majority of potential drug candidates never succeed due to a lack of efficacy or lack of funds. Thus, except for those who have money to play with, they are not the best investment as the potential for loss is too high. Many, many biotech companies, with very promising therapies, close their doors or shelve compounds out of lack of funds that may have saved millions of lives.
The AIDS clinical trials groups (ACTGs), the federally funded clinical trial system, which should be available as a resource to continue the study of potential new drugs, focus most of their funding to support big pharma and studies of drugs which are already available, almost always turning away the companies, and thus the drugs, that need the support the most. NOBODY speaks of this on any large scale. Let the pharmaceutical companies who already earn money on their drugs do their own post-regulatory approval studies. If they don't want to do them then we demand they do. There are enough options, in many cases, where a doctor or patient can choose one drug over another because the company that makes it has not forked out the cash to do additional studies. They make more than enough profit to pay for studies that will profit them in the end anyway. The ACTGs should be used primarily to study novel research on drugs we may not otherwise get due to financial restraints for those making them.
We need the NIH to focus more money on cure research and novel therapies. Therapeutic vaccines (vaccines for people who already have HIV) just to name one potential option, could drastically decrease the amount of time spent on HAART. Imagine only having to spend 3 months or 6 months a year or less on HAART instead of 12. We could double the amount of people on HAART, wiping out ADAP waiting lists in the U.S., and double our financial commitment to PEPFAR and the Global Fund. Many people question the SMART study that said it is not safe to take drug holidays. More studies should be done to ascertain the safety in this. There are therapeutic vaccines in phase IIa and phase IIb showing great efficacy. Vacc-4x, Dermivir and Fit-06 are just three that are showing promise but gain no support in their development. Due to a lack of funds, development is slow, too slow and by far not a priority for those who make the decisions about where the money goes. Studying therapeutic vaccines and other immune based therapies/cell based therapies, eradication strategies, gene therapies, and other novel approaches must be made a priority just as we have done with ARTs.
The NIH has just announced they are committing $720 million to create the National Center for Research Resources, which will speed the process of taking a compound from the lab towards advanced clinical trials. Will HIV cure research be included in this budget? If not, it shows the possibility of creating a specific center for HIV cure research. In the end, a big investment of funds -- though difficult now -- resulting in new innovative drugs or a possible cure would save the American people billions in the future on ARVs and treatment and care of an ever growing population of people with HIV and AIDS.
New legislation such as HR 1179 must be supported and/or drawn and passed with new money to support biotech companies in the development of novel therapeutics and cure research. Researchers, physicians, patients, activists, advocates, care providers, policy makers and everyone involved in the AIDS crisis must form a committed front to end this pandemic. We have lost enough.
Am I simplifying the problem? Yes, but it is time to make this black and white. The questions of how we initiate a united front with the express goal of finding a cure for HIV will never be answered if we don't start asking the right questions. HAART is essential but should never have been our one and only primary focus. ARTs will never be available for everyone. And those who do have access are still dying of AIDS-related complications and co-morbidities made worse by HIV infection. HAART is not the solution. It should only have ever been a stop-gap. We have closed our eyes, said I'm okay and stuck our heads in the ground for too long. WE are not okay.
We, those of us infected with and affected by HIV, must stand up, as if our lives depend on it because they DO, and move this pandemic to an end. It is not enough that some of us are okay at the moment. It will never be enough until there is a cure.
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