By Jose De Marco and Stephen J LeBlanc
(Members of the Board of Directors, The AIDS Policy Project)
Just three years ago, everyone thought a cure was a distant dream.
But the case of the Berlin Patient, cured of AIDS in 2007 and HIV-free today, has inspired new research in laboratories from San Francisco to Melbourne, Australia. An activist campaign is calling for $240 million for AIDS cure research at the NIH, funded with money from a department that is being shut down. People affected by HIV are becoming aware of the possibilities. A recent poll by the National Minority AIDS Council showed that fixing ADAP and an AIDS cure were the top two policy priorities of its constituents.
But you won't find anyone talking about a cure at AIDSWatch, the annual lobby event organized by the National Association of People with AIDS. Starting February 16th, it promises to advocate for "the most crucial issues facing the 1.3 million people living with HIV/AIDS in the United States." A cure is not on their list.
Four hundred people with AIDS and their allies will fan out across Capitol Hill to talk about the need for AIDS funding with their legislators. But despite letters of support from organizations of people with AIDS ranging from ACT UP Philadelphia to the National Minority AIDS Council, NAPWA has declined to include AIDS cure research on the agenda for discussion or for lobbying. Their agenda is set, they say. According to one organizer, there is no time for a speaker to discuss AIDS research, let alone the cure. He told us there will be no specific dollar requests in the lobby visits. Otherwise, volunteer lobbyists would suffer from "information overload."
Funding for the National Institutes of Health has been stagnant since 2003. The NIH's main AIDS research division, NIAID, must reject funding for 77% of the AIDS research grant applications it receives because there is no money to pay for more.
Worse, the NIH spends only 3% of its AIDS research budget trying to find a cure for AIDS. Three percent. There is no commitment yet to increase this funding, even as the entire field has been reinvigorated and exciting research is being proposed in labs all over the world.
Only 5 million of the 33 million people with HIV worldwide currently have access to AIDS meds. Only 1/3 of the very sick receive them. In 2009, nearly 2 million people died this way.
We need a cure.
Congressional briefings, paid lobbyists, and advocacy reports have not, so far been enough to increase federal funding for the NIH, let alone AIDS cure research. With Congress trying to cut spending back to 2008 levels and some members of Congress trying to de-fund the US Agency for International Development (and therefore US-funded global AIDS treatment), what else can we do? What could work?
Hundreds of thousands of people care about AIDS in this country. We need to leverage their voices to loudly, publicly, and specifically call for more AIDS funding--for the ADAP, for housing, for the NIH, and for a cure. This movement requires the grassroots power of people with AIDS. Expertise is essential--but expertise without political power cannot get the goods.
NAPWA must reverse its mistake and include AIDS cure research, and indeed overall NIH funding on its agenda for policy briefing and lobbying on February 16th-18th. Research advocates want to share what they know with the hundreds of people with AIDS making the trip to Washington from states across the US. We want them to talk to their representatives in Congress about AIDS cure research, and the need for more NIH funding. The fact that there are promising research avenues for a cure for AIDS that remain starved for funding will come as news to nearly all of them.
AIDSWatch is the only national AIDS lobby day we have. It is a critical chance for people with AIDS and their allies to push for funding and educate Congress about the issues. Including progress toward a cure.
The NIH, despite its meager financial commitment, is still the leading funder for cure research worldwide. AIDS research is a global issue. What happens at AIDSWatch affects the world, but the world doesn't have a say in what is on the agenda at AIDSWatch.
Political power, including focused grassroots power, is critically needed to move funding for an AIDS cure forward. Hundreds of people coming to Washington in two weeks can help--if they get the chance.
I am living with HIV and had always hoped there would be a cure. I often wondered why no one talks about a cure. I am shocked to find that the NIH spends so very little on finding a cure. I am even more shocked that AIDS Watch is not talking about a cure. We need medicine to live for sure, but curing this disease is just as important to me. I am afraid the government does not want to continue to pay for my AIDS for my entire life.
What could be more important than a cure?
A cure for HIV infection and AIDS has now moved from a distant dream, into a realistic possibility that can be studied in a planned, systematic way.
And an effective cure would be more accessible than life-long treatment could ever be. Even if the drugs were free, most people could not get lifetime treatment anyway, because of the decades of medical, infrastructure, labor, and other costs required.
Financially, a cure will be much better than free, because it will save billions of dollars in medical, lost-productivity, and other costs.
AIDSWatch should let Congress know that there is an end to the tunnel -- a realistic possibility of finding a cure that could end this whole nightmare.
Promising developments in the search for a cure for AIDS can’t be left on the table as a result of bureaucratic or administrative red tape. The AIDS movement has traditionally been able to respond to the complex nexus of science, medicine, emotion & politics with agility and common sense and a cure is too important for anyone to drop the ball now.
Acknowledging that I know and respect some of the current NAPWA staff, the organization is not as 'connected' to the voices and issues of REAL people living with HIV & AIDS in this country. If you don't believe that, ask communities in the South. In fact, ask people living with HIV anywhere in the U.S. about what NAPWA has meant to them and for them.
One problem that has led to this disconnect is NAPWA's challenge of developing and supporting the leadership and organizing of people living with HIV in their communities. Despite having local/regional representation and networks as the overwhelmingly talked item on NAPWA member 'wish lists' during the now extinct Staying Alive Conference - designed specifically for people living with HIV & AIDS across the U.S. and its territories - the organization, influenced and led by decisions from its Board of Directors (http://www.napwa.org/content/our-board-and-staff), refused to implement that strategy and rather addressed other interests.
Preposterous! An outrage! foolish and obtuse in the extreme. WHY on Earth would The National Association of People Living With Aids (read that name again) NOT support, advocate for, nurture, suggest and demand funding for research and the goal to find a CURE!?!
I could easilyrun down a large list of why it absolutely IS significant, important - nay : essential! to do just that.... I will name a few that come to mind.
We NEED a real "cure". Although persistence, dedication and technology have indeed blessed us with good medications.. they are - ultimately -just a small speed bump for HIV. the cumulative cost is astronomical - although admittedly they stave off the advance of the disease,and therefore death - not everyone has access or can afford these medicines; they have numerous side effects and toxicities; they require dedication and persistence to TAKE consistently for perhaps decades - as long as there is no "cure", HIV will continue to mutate and new lines of ultra expensive medicines will have to be invented and implemented. BILLIONS of dollars, hassle, cost and continual new infections- on and on.
The nascent science and reseach are in fact "out there" already. There are wonderful physicians, researches, scientist in clusters literally ALL over the globe who are already underaking this work - they desperately NEED both our support AND funding.
This work will NOT "only" benefit society, humanity, nations OR people with AIDS - the peripheral knowledge and insight gained will benefit countless other technologies and fields of medicine, science, pharmacology and on and on. Just as AIDS research has benefited from Cancer research so Cancer research gets a reciprocal rebound of new data, clues, insight and knowledfge going back the OTHER way and out in NEW (perhaps even yet unseen or unimagined)ways!
Imagine the Large Hadron Collider shooting a high speed beam and the resultant explosion of particles and new data and information! This is why multiple nations invested many billions of dollars : because of the MASSIVE knowlege, data, information and potential benefits to be gained!
Additionally in an era where the decline and lack of support for and interest IN science, engineeering and mathematics is acknowledged and mutslly deplored, then should we NOT all actively be working to go in the OTHER direction and beef this UP and popularize it and support it?
In a time when our competitiveness and the lack of jobs is a cause for concern, why not take pragmatic, sensible ACTION to start getting the public onbaord and EXCITED aboutintrigued with and employed BY science, medicine and resarch???
Most of the wonderful things we ALL marvel at (or, take entirely too much for granted, now) have all largely com about through dedication, funding, and research.
This can affect the world, the nation, individuals, society, humanity in SO many ways it would be not only stupid, but p[atetly absurd NOT to support it in every way imaginable and THEN some!
I am a "person living with AIDS' and I heartily ENDORSE suporting a search for a cure.
For those who do not know PLEASE ; I URGE you to look at the Aids Policy projects site and do some other research. This work is already moving ahead by leaps and bounds - it is decidedly NOT a "pipe dream' or a fantasy now - and it needs FULL backing, publicity and support.
There is NO reason not to give it - it's one of those rare "WIN /WIN" situations in terms of long term benefits and repercussions.
Why NOT support THIS needed work rather than violence, killing and WAR?
We all stand to gain , and to benefit.
“Ah, but a man's reach should exceed his grasp, or what's a heaven for?” (Robert Browning)
We JUST celebrated Jules Vernes birthday - how many of the things he only dreamed of are now oart of daily life?
LET'S ROLL!
We NEED a cure. We need a cure NOW. The work that the AIDS Policy Project is doing to draw both much needed attention and resources to the search for a cure is commendable and has opened up a whole new exciting dialogue amongst activists and researchers alike! Of course we need to draw in our legislators!
First please excuse typos as I am legally blind from a long ago cmv infection, so I might be a little smarter than my spelling would indicate. Proofing is too tedious for words, so I just type...
Remember when Chris Farley interviewed JOhn Lennin...uh, uh..."remener the Beatles???
Well, remember Act up. Remeber folks chaining themselves to the FDA fences. Well how about it folks. The cure is here and two companies have it, if they would or could only get together. Sangamo Biosciences makes the zinc fingers and is a real company, already getting revenue from zinc fingering in the ag sector. Biotime can make individual stem cells from individual donors for cadillac cases and for the wallmart HIV crowd, ie the rest of us ISCO can make stem cells by the tanker load., and with just about 100 xwll linwa match 99 percent of the worlds population. So if Sangamo and ISCO fot together and the FDA got the f out of the way, we could be back to the continental baths by Easter, and maybe even get a new stem cell facelift too.
I don't have any sangamo stock right now and a tiny remnant of ISCO, but I do own so biotime. I didn't want to post his cuz I hope to buy these stocks, but I figured I couldn't live with myself if I was withoholding this info from this forum.
The best thing some of you wealthy folks could do and not so wealthy is buy these stocks, so that they could more easily attract talent andkeep talent and funds.
The politically inclined could lobby to get some pressure on the FDA to streamline approval for the zinc finger HIV trials and the stem cells they could be used with.
I am a 28 year LTS. I has blood collected in 2003 by the Share project but know that I got the bug on Colubus day 1872 from a liason at Uncle Charlies's downtown in Frewich villafe. I am visually impaired from CMV, but do pretty well thnak you as I have been non detect since 1996 thanks to the huts who chained thenselves to the fences and the greedy heroes at the Pharmas who created Crixivan, saquinavir and rescriptot just before my expiration date.
great post, phillip! from a fellow halfblind cmv'er (30+ infected)
John James is spot on again.
I can only echo his comments.
practically speaking, from a financial view it's the only logical solution.
From a humanistic view, it's our global duty with the entire first world countries.
-David
I have been an AIDS activist with ACT UP for the past seven years. We have fought for medication, for housing, for important prevention and treatment. And we have won. Then, as priorities of the government go the way of the powerful, we have to fight all over again.
The cure and research into other medications has been left behind in our day to day struggles to maintain what we have.
It is critical and brave to challenge the idea that what exists is all that there can be.
There are people in my life who i love who are living with HIV. And i want them to live.
Thank you Katie and Jose and those that are fighting for what people tell you is impossible. The cure is certainly an impossibility if there is no effort to find it.
First, CMVers, right on! This may be one of my favorite quotes of 2011:
"I have been non detect since 1996 thanks to the huts who chained thenselves to the fences and the greedy heroes at the Pharmas who created Crixivan, saquinavir and rescriptot just before my expiration date."
As a hut who chained herself to the fences, thanks, man :)
Second, we just need a cure for AIDS. Everybody knows it, but not everybody is supporting it yet. We've never been closer. Let's make this a high priority of our community, let's get this $240 million at the NIH. I talk to major researchers every week who can't get important AIDS cure projects off the ground because of lack of money.
That is an immoral situation. But together, we can change it.
In deep solidarity with people with AIDS,
-Katie xo
More and more information keeps coming in about how close we are to a cure. It is so sad and frustrating that people are stalling. Please, please....let there be a cure. Let there be research.