Sep 15, 2010
I've had this huge dilemma ever since the following occurred. I found out I was poz while in the hospital. They gave me Sustiva only and with no plan to continue. After I became more knowledgable, I learned this was a huge mistake. They never should have given me just the Sustiva compentent first of all and with no plan to continue. I've learned I have the K103N mutation and I cannot take NNRTI's. Most I have spoken to about this say their actions no doubt caused this resistance. Some have said this is not a big deal as I will have other options. Some even believed this could have been a good thing in that it made my virus "less fit" at the cost of losing NNRTI's. I don't know what to believe.
I keep thinking what happens if I should need NNRTI's down the road. I've thought they just made an innocent mistake. Then, I get angry that they were so stupid and have thoughts that I should actually sue. I know docs don't like the word "sue"--sorry about that. I believe the doc felt he knew all and didn't want to consult anyone. This is especially frustrating when I learned 2 infectious disease doctors were paid to stop by my room for less than 1 minute to tell me I'm not going to die. I cannot understand why they got paid for that first of all as they obviously weren't consulted on whether HIV meds should be started and which ones. If they were consulted and the Sustiva only was one or both their idea, then that is even more troubling.
I'm wondering what your thoughts are about this K103N mutation and losing NNRTI's. How big a deal is this? And, what about a few telling me it may have made my virus less fit and actually helped my body be able to fight the virus as I'm still not on meds yet. This all just gets scary. I had someone just tell me I could run into more resistance issues that the genotype didn't pick up due to those resistance issues being hidden now after several years of infection. I'm not sure how true or likely that is.
Response from Dr. McGowan
I am very sorry to hear about your experience. It is especially tough learning about HIv and have this happen.
It is very important to get your care from someone knowledgeable about HIV treatment to be sure that you only get the best care going forward. A god site to find an HIV expert is through the American Academy of HIV Medicine (www.aahivm.org) and click on the Find a Provider" link, or the HIV Medicine Association (www.hivma.org).
Having access to continue treatment is essential and should be in place before treatment is started. For people who lack insurance the AIDS Drug Assistance Program (ADAP) funds HIV treatment through a combination of state and federal money (sponsored through the Ryan White Care Act).
K103N is a common mutation (alteration in the virus' genetic code) that enables HIv to grow in the presence of the first generation NNRTIs (Sustiva, Viramune and Rescriptor). It does not really slow down the virus or make it "less fit" to grow. So it is best avoided. However, there is a new generation of NNRTIs: specifiaclly etravirine (Intelence) that is currently available and others close to being released (rilprivirine) that have activity even if the virus has K103N. So this is open to you. Also since only 1 drug was used the other classes of treatment are still fully available to you.
This should not stop you from getting full suppression of the virus since there are indeed many good options (in fact 3 of the 4 first line treatments would not be effected at all by K103N).
I wish you the best during your treatment. Joe
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