Aug 2, 2003
I asked the following question and was appeanantly misunderstood. The question could be restated as how do we know when a treatment should be started and what is the patient's role in this decision.
I am the first consumer member of the Minnesota DHS formulary committee and recently was appointed to the Advisory committee, which was established to vote on any issues where a concensus cannot be reached. Our first meeting was held in conjunction with the full formulary committee.
I invited myself to my first formulary committee meeting when I found out that it was an open public meeting and wanted to attend to see just how decisions are made. The attendence has grown to about 25 at the last meeting and the discussion focused on the number of "slots" that may be alloted to patients in MN.
Fuzeon is extremely expensive (10,000/week, requires preparation prior to being injected (I understand that it may be made up in advance but refrigeration is required) and many of the clinical trial group needed assistance in administration and adherence to the rigid protocol.
What concerns me as an informed citizen is how should the decisions be made regarding who will get the medication, will their clinic/caregiver have enough time to assist every patient receiving fuzeon, and if fuzeon is a drug of last choice, when other drugs are not working, who will have to make life or death decisions.
Do we need to organize massive fund raising efforts, let the lottery of who gets the drug take its toll or other kindred things.
Please help all of us by giving us the strait scoop on Fuzeon so we can plan our courses of action.
Jerry in the Twin Cities (MN)
Response from Dr. Young
Thanks for your question.
I can appreciate that enfuvirtide (Fuzeon) is very expensive, but if your state is paying $10,000 per week, you're getting a raw deal. (I think that the price might be discounted to you, closer to $10,000 per year.)
This expense raises some awkward issues for treaters and policy writers alike.
I do think that in an environment of somewhat restricted funding, that not everyone should have unlimited access to medications that are this expensive-- fortunately for this discussion, only a limited number of persons actually need this "early" fusion inhibitor. Additionally, because of the expense, you probably can figure that only experienced HIV treaters should be writing the prescriptions for the medication. Nevertheless, we are facing a crisis of funding for HIV medications (like ADAP), and this issue arises even before we talk about enfuvirtide.
It does say that if we believe that providing medications to persons with HIV is an important part of public policy, that we cannot simply sit back and let those less invested in our community to make the political decisions that affect the daily lives (and health) of those living with HIV-- call your US senators today, because legislation about the amount of money that is available for HIV medications is being debated soon (called appropriation bills).
Fortunately for me, I don't have to advocate for the government or public policy, but rather for my individual patients. If this is a medication that I feel is best suited for the patient, with a good chance of improving health, that that is sufficient basis for seeking the medication.
I'm sure that this doesn't fully answer your question, but hope that it gives you my perspective on this difficult issue. BY
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