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Public Health or Slippery Slope?

| 7 Comments
When I was invited to contribute an article about ethical issues concerning "treatment as prevention" for the Canadian HIV/AIDS Legal Network's HIV/AIDS Policy and Law Review, I  turned to James Krellenstein for assistance.  James is a young activist I met several years ago when I spoke at Simon's Rock at Bard College and he was of immeasurable help in preparing the article. 

What we've written is likely to displease some readers.  We believe public health departments in New York and San Francisco have overstepped ethical boundaries in advocating anti-retroviral treatment for those for whom treatment has not been proven to provide a net benefit. 

We support treatment choice for everyone with HIV, but implying that the benefits have been proven to outweigh the harms for those with higher CD4 cell counts is wrong.  Public health departments that imply or state otherwise sacrifice the health of the individual in favor of a public health strategy that may or may not ultimately prove effective in slowing transmission of HIV.

HIV prevention is important, but it is not the only value to be considered.  This isn't the first time public health policies have compromised patient autonomy and the rights of individuals to be fully informed about medical treatments and procedures.  But the relative silence and lack of protest from medical ethicists, policy leaders and AIDS activists is discouraging and concerning.

I look  forward to hearing your thoughts on the issue.


Sean on:

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Comments on Sean Strub's blog entry "Public Health or Slippery Slope?"

I agree completely with what was written. When I saw a push for this in my local community, I realized this wasn't the greatest idea. My biggest fear is people not adhering to the medications. It is a HUGE commitment. Becoming resistant to different classifications of our meds is a huge concern for me. Infecting others with drug resistant strains is a real problem and I think it could lead to another epidemic of drug resistant strains of HIV.
Another interesting outlook is this. Is it cheaper to teach people with HIV to have healthier lifestyles, offer gym memberships at the local YMCA or whatever, offer nutritionist and smoking cessation, drug rehab, etc. than to put people on these expensive meds with countless doctor visits, other meds to counter the side effects of the ART medications (high blood pressure, diarrhea, depression, upset stomach, lipodystrophy, and more!). If a person can healthfully not take medications for years with some help or guidance, isn't it cheaper and healthier for everyone around? Why is this overlooked so often by professionals? Shoot, even a free bike program is cheaper than spending $2,000.00+ a month on meds and doctor visits!

I agree, we need more diverse and in depth data to help us decide that this is helpful benefit to starting treatment early. Long term side effects on the body and mind need to be established as well. Early treatment may prove beneficial, but if it increases your risk of heart attack, how beneficial is it?

Job well done on the article!

I agree completely. This is ludicrous. It's a huge, huge cost and if you don't keep it up you build up immunity and then where are you. This whole push stinks of the pharmaceutical companies marketing to increase profits. Charlotte, hit the nail on the head, it's cheaper and easier to educate. I worry that too many will take this as the gospel, not follow through, wind up positive and then be upset. I hate to be a Cassandra, but this really has the potential to do more harm than good.

I've been thinking this for a while, and my doctor's offhand dismissal of my concerns about sustaining a medication regime confirmed my thinking that individual treatment is increasingly taking a backseat to public health initiatives. It seems to me that this new mandate is in step with the increasing criminalization of people with HIV. We as people are now a problem to be managed, not just the virus we live with, and we are increasingly treated as if we were living viruses ourselves, to be suppressed, silenced, and quarantined in the name of a public that is always, and always deserves to be, characterized by its excellent health. It is a very worrying trend. Thanks for the article!

Sean, i think you're wrong on this but i support your involvement as a watchdog. with the legal and political environment for HIV+ people being what it is, vigilance is laudable.

however this article achieves an over-ripe tone by its simple failure to address the continuously-accumulating evidence that HIV itself is a systemic virus causing various forms of damage throughout the body, irrespective of T-cell count. it appears that SF and NYC have made a reasoned decision that they expect (as do i) that further evidence of the intrinsic harm of HIV-infection at all stages will continue to accumulate. they have also probably collectively decided that the possible damage caused by current and future ARV therapy is likely to be more ultimately controllable than what may result from allowing the continued widespread evolution of an already-very-mutation-prone virus showing more tricks and bearing more fangs every day.

this article also overstates any "coercive" effect that results upon a patient when the health authorities in his/her city issue guidelines which the patient's caregiver can electively ignore. i have never met a doctor or NP lacking in the self-possession or cojones necessary to disregard a "recommendation" (as opposed to a requirement, or even a "guideline")...in practical terms, these suggestions from NYC and SF pale in comparison to the coercive influence any individual doctor would have upon any individual patient.

i have both heard about and read about some doctors who still privately advise their patients that they personally feel waiting until t-cells fall below *200* is worth considering...the memory of drug toxicities is obviously ever-present for many.

START is not the only source of credible data regarding what threshold of health best suits initiating ARV...and if the START results are ultimately ambiguous, it's not particularly ethical to then wait for some new longterm study to further push back a definitive answer to initiating ARV by several more years.

based on my own experience and exposure to HIV science, i support the NYC/SF position and expect more cities to follow suit. i also expect this to strengthen the political case for funding ADAP and HIV-treatment generally.

i greatly enjoyed meeting you at the HIV-criminalization talk in NYC recently and enjoyed the broad discussion, and appreciate your warning here about the ethical implications of pushing TasP before the START results are known...however, in both issues i have to appreciate your specific position while also noting that i dont think you fully describe the political or scientific concerns informing your opposition regarding either criminalization, or the "when to start" question.

that's not a bad thing (somebody has to be a pitbull for us) but i think it limits your ultimate influence.

with much respect,

Jeton

It's a great article Sean, too little is said about the ethical issues. Many people seem swayed by what appears to accord suspiciously strongly with the pharmaceutical industry marketing hype for HIV drugs, even some who consider themselves to be human rights activists.

I can see both sides of this. I live in a country that has only just started to support meds under 500 CD4. I went onto meds with a high CD4 in 2003. I had many ongoing HIV issues that related to a low CD4 count. I have to say that all of those issues went away with meds and allowed me to go back to work full time. This being said I now live with side effects, which get worse every year.
I took an "unapproved" drug holiday recently just to see if I could stop them for a while. This decision turned out to be very unwise as my health went down as quick as my V/L went up.
So I guess if this is a case by case basis then I do think its wise to start meds. I also think the benefits of reduced transmission on meds is something that needs to be explained and the general public made aware. I am tied of living like a leaper due to poor educattion.

It bothers me that there is such a push for Patient-Centered-Care now, yet this policy is completely not patient centered. At my clinic's consumer meeting, it was talked about how the policy didn't apply to people who might be long term nonprogressors, however the problem here, is that if everyone is started right away, they never have a chance to see how their body deals with HIV on it's own. Many many people's immune systems hold HIV in check for years before dipping below 500. And it should be noted, that even 500 is still part of the normal range. I think the financial cost of treating early with maybe no benefit to the patient, has been virtually absent from the debate, but it is staggering. How could this be afforded universally, when so many people who NEED to be on treatment aren't getting it yet and we have waiting lists?

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This page contains a single entry by Sean Strub published on May 30, 2012 10:34 AM.

HIV Criminalization Community Forum in NYC was the previous entry in this blog.

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