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No hope

Apr 4, 2017

Hi Doctor. About to begin ART with triumeq. First thing on the Pack : a notice That it CAN PROVOKE DEATH and 30 pages on secondary effects in which it is imposible to make a clear distinction between mild ones and lifethreatening ones. All this informatión is far away from your usual description of triumeq as " very very well tolerated"... To overcome the shock of diagnosis , we are reapetdely told That we Will not die, and then we are put on a treatemnt which can kill us..or develop conditions that can kill us...It is either a manageable desease or a delayed death sentence from the virus, from the treatemnt or from New conditions or a combination of the three. The incredible number of questions you try to answer in this forum is a proof. We never see something líke" hey, i started meds, i am adherent, i stay in care,and every thing is fine.." We only read problems, unsuccesful treatments, and more and more illnesses... My careprovider does not answer questions, just keep on say ing each patient is different and that Hiv is a very serious illness and that alongside a lifetime ART, i Will have to undergo an agressive detection of probable complications for all the rest of my life. ART is compulsary, but it is not a solution, for there is none. Only wait and see what is the next incoming health problem. Not very supportive,but very clear...there is no hope. Problems WILL arise. No Wonder HIVERS are more prone to depression

Response from Dr. Young

Hello and thanks for posting.

I disagree. There is a lot of hope for people living with HIV. Today's medications prevent disease progression, AIDS, cancer and death. They also prevent transmission to others.

The information that you're reading would appear to be the package insert that accompanies any FDA-approved medication. The package insert (or PI) is chocked full of information about the safety and effectiveness of medication and in whom and how to use the medication. PIs are written for health care professionals, there is an accompanying write up for patients at then end of the PI (called "Medication Guide") that helps explain things in more user-friendly terminology.

Properly selected and managed, HIV medications don't provoke death. Rather, they are a necessary (if unwanted) tool in promoting health. If anything, initiation of medications has been shown (even in people who are asymptomatic with normal immune counts) to reduce the risk of death and other serious complications (like cancer and tuberculosis).

Regarding the warnings about the use of Triumeq (or other abacavir containing medications, like Epzicom/Kivexa), there is the potential for a allergic reaction (called hypersensitivity reaction, HSR) to abacavir and improperly managed (as it was in the past, had lead to serious problems and even (rarely) death. Fortunately, we now know (and it's recommended) that a simple genetic test (called HLA B5701) tells us who is at risk of developing the HSR and those who are not.

Other severe reactions are also fortunately very rare (for example severe liver toxicity or lactic acidosis).

It's unfortunate that your health care provider doesn't seem to answer your questions, but do know that HIV medications do work, and are very, very well tolerated by the vast majority of people who take them. Yes, ART is recommended for life, or at least until we a cure is discovered. ART is not compulsory, and you can elect not to take them or even (though not recommended) to stop- as a matter of self-determination and human rights, you can't be forced to take medications against your will.

Health problems can and do arise- even among people who don't live with HIV. What the first priority in HIV care is to prevent HIV from causing excess disease (like AIDS complications) while simultaneously preventing complications or side effects from the medications we use to control the virus. After that, then the focus shifts to healthy aging with HIV. In this diverse topic, we evaluate risks and hopefully prevent premature heart, liver, kidney, and bone disease, cancer while dealing with the thorny issues of mental health, stigma and discrimination.

I would suggest linking to support groups (if they exist in your locality) or surf the many personal blogs at TheBody.com. Among them, you'll find the tales of real people, who like you have sometimes struggled, and survived the virus and navigated care and treatment.

Do feel free to write back and be well, BY



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