Out of the Mouths of Babes: The Therapeutic Vaccine Question
By Loreen Willenberg
March 9, 2010
Therapeutic: adj. 1. Having healing qualities; curative. 2. Pertaining to therapeutics. Also therapeutical. Abbr. therap. [< NL therapeuticus < Greek therapeutikos < therapeutes one who attends < therpeuein to serve, take care of < therapon an attendant].
For many years now I have donated blood, cells and tissue to several clinical research studies on both coasts of the United States. I do so because I have an extraordinarily robust immune response against HIV infection. As I understand it, once these 'anti-HIV' responses are defined, there is a high probability my contributions to science may assist in the development of a therapeutic vaccine to treat people living with HIV/AIDS.
When I contemplate what this means, I imagine my HIV-positive friends and world community members free from the burden of having to take antiretroviral medications -- freedom from the problems posed by access to treatment, the economic hardship to pay for the medications, daily dosing schedules, missed dose worries and the worry over developing resistance to or of failing a regimen, toxic side effects and potential problems with their kidneys or their heart -- free from the down-and-dirty reality of living with HIV/AIDS today on treatment.
In my humble opinion, the vaccine development dialogue seems to be inequitably skewed toward a preventive vaccine and appears to be supported by an underlying moral judgment against the HIV-infected population at-large. This judgment, and public health policy in the United States, is couched in phrases like "[developing] a vaccine that prevents HIV infection has always been and still remains the aim of HIV vaccine research efforts ..."1; "[a] vaccine would need to be delivered as part of a multifaceted, comprehensive HIV prevention program so that recipients minimize or eliminate behaviors that expose them to HIV"2; or, "... the distribution of AIDS vaccines is independent of any risk factor behavior, which could facilitate outreach to highly vulnerable and marginalized populations, such as commercial sex workers and injecting drug users."3
As I approach the 18th anniversary of my positive diagnosis and my knowledge-base on vaccine research increases, I must ask what fundamental ideology fuels prioritizing the preventive version of an HIV/AIDS vaccine over a therapeutic one? Why is there such a wide gap in funds between the two versions, and how is it justified?
In my quest to find answers to these questions (and I am not alone in asking them), I had the recent good fortune to read an incredibly inspired piece on this subject, eloquently written from the perspective of a very wise 13-year-old young man, Nathan Sheon, on the occasion of his Bar Mitzvah. Nathan's speech was graciously shared with me by his father, a colleague in the HIV/AIDS advocacy field.
In a few short paragraphs, Nathan echoes my concerns and lets me know that advocacy for the development of a therapeutic vaccine is in good hands in the coming years. I have been granted permission to share Nathan's piece with you and consider it a privilege to do so.
The full text of his speech is reprinted below. You can also join Friends of Therapeutic Vaccines for HIV -- a Facebook group Nathan created to keep interested people updated on this unique advocacy effort -- and follow Vax4HIVPatients on Twitter.
Nathan Sheon originally gave the following talk as his Bar Mitzvah "dvar Torah," or speech, on Feb. 13, 2010, at Adat Shalom Reconstructionist Congregation in Bethesda, Md. The opinions are those of the author alone, though the community was mighty proud of Nathan and his twin sister Lila that day!
Today's Torah portion, Mishpatim, deals with many laws -- and as I see it anyway, it's mostly concerned with bringing compassion to those laws. It mainly discusses how God issued these laws to the people via Moses, and explains the individual laws themselves. Many of these laws emphasize the need to respect the rights of the downtrodden.
Of course, when it comes to the rights of the downtrodden, the Torah did not anticipate many of the situations we deal with today. When Torah was written, many people had livestock, so the examples of the laws often dealt with theft of animals, or agriculture-related crimes and punishments. Special exceptions were made for those who were in most need.
I'd like to think about what it might be like if Mishpatim were written today, instead. I wonder how it would address the rights of such downtrodden people as those who have HIV/AIDS, especially when it comes to making sure that people who have HIV/AIDS can maintain their dignity. Here's one angle on it: I believe that sometimes, in our rush to find a preventive vaccine to give to healthy people, we may be forgetting what Mishpatim would say about helping people who already have serious diseases like HIV/AIDS.
Let me start the discussion with a cautionary tale from a half century ago. When Jonas Salk discovered a vaccine to prevent polio, healthy people who got the vaccine stayed polio-free -- but then funding and interest dried up, so researchers stopped looking for treatments for people who already had polio, and those people (thousands and thousands of them) died. Even today in some parts of the world, people still die from polio, all these years later.
If our experience with polio is any guide, then imagine what it will be like when researchers someday discover a vaccine to prevent HIV/AIDS. The government money will go away, the public will lose interest, and there will be no way for the millions of people with the disease to get cured. We can't let that happen with HIV/AIDS.
When we hear the word 'vaccine,' most of us think about babies getting vaccinated so they won't get a disease. That's called a preventive vaccine. But there are also vaccines that can treat people who are already sick. These are called therapeutic vaccines. And today there are researchers working hard, often with almost no government funding, to find one that works.
But I'm afraid the same thing that happened with polio is happening to people who have HIV/AIDS. If our society is focusing almost all of its efforts on the worthy cause of finding a preventive vaccine, while we basically ignore the need to find better treatments for those who already suffer from HIV, we are condemning these people to a life with little dignity. Mishpatim would tell us that we must do better by remembering our modern day downtrodden.
For my Tikkun Olam project, I've started to volunteer, and write for The AIDS Institute -- and I work with AIDS treatment activists, people with HIV/AIDS who are demanding that more money be spent researching treatments for people who have the disease. I also plan on organizing a protest via Twitter to get people to join in asking the government to fund research for better treatment that could cure, or bring about a full life for people with, HIV/AIDS.
Finding a therapeutic vaccine would help people with HIV/AIDS to regain their honor. The current treatments, anti-retroviral, are really a form of chemotherapy. They keep people alive for longer, but in the end, these patients with HIV/AIDS will die. Their only real hope for living permanently with the disease, or beating it, is to find therapeutic treatments.
So what IS going to happen to the 33.4 million people who the United Nations has conservatively estimated are already living with HIV/AIDS? These people are dying at a rate of one person every fourteen seconds. Are we prepared to let that continue? Now we are at the point where we have decisions to make about how to spend the money we have for research. Do we just prevent new cases, and abandon the old?
In Mishpatim, the Torah tells us to not undermine the rights of the needy. Today, Mishpatim teaches us to do better than that -- to do the right thing for people who are already suffering from this terrible disease.
BLOG: Life as an Elite Controller
Photo credit: Bob Roehr
Loreen Willenberg, a resident of California, has survived HIV infection since 1992. She is part of a tiny group of people with HIV that scientists call "elite controllers." What is an elite controller? It's someone with HIV who has never had a detectable viral load, although they have never taken HIV meds. She also has an astonishingly high CD4 count and has never experienced any adverse health effects from HIV. Loreen considers it her responsibility as an elite controller to help other people with HIV, which is why she's currently participating in three clinical studies in which researchers are trying to understand how people like Loreen actually control the virus. In fact, she's created a new organization for people like her called the Zephyr Foundation.
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January 10, 2012 - Memories of Bonnie G.: A Blog Entry by Loreen Willenberg
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February 7, 2011 - On-the-Air: My First Radio Interview -- "Have You Heard of HIV Long-Term Nonprogressor?": A Blog Entry by Loreen Willenberg
December 6, 2010 - Marvels, Milestones and Mom: The Ups and Downs in a Year of Functional-HIV-Cure Research -- A Blog Entry by Loreen Willenberg
July 23, 2010 - The Alphabet Soup of Immune Control: ADCC Antibodies, (Memory) B-Cells, Elite Controllers and Exposed Sero-Negatives -- Will They Amount to Z? A Blog Entry by Loreen Willenberg
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