Having been HIV positive since Oct. 10, 1998, I have been prescribed all types of meds by doctors who specialized in HIV care.
Unfortunately, even after a bone marrow exam, they still could not find why I have become anemic and why the neuropathy in my legs and in my arms has gotten to the point that only surgery on my neck to replace vertebrates can help. I have had to start taking Procrit [generic name: epoetin alfa; it is used to treat anemia] weekly injections and blood draws because my numbers were not where my doctor said they should be. They never level out, so I can be up this week, down the next, and finally, after some time on Atripla [a coformulation of the HIV meds efavirenz, tenofovir and emtricitabine], I have a stomach that, at 5'8" and 170 pounds, is terrible.
But the best part is the Early Intervention Program (EIP) here in Washington state. It uses a formulary that does not put this all together, so the cost of all non-HIV-related stuff here is not covered. If Medicare does not pay it all, I am left with all these growing bills, not to mention the county we live in has no case management for HIV. Thanks to our education, formal and learned, over these years, we have taught pharmacy workers how to help draw blood at the hospital in our very rural, remote area. Also, outpatient services at the hospital help issue the Procrit shot weekly after the blood draw and analysis. Finally, we have to make sure that all the hospital records and doctor's records are all matching, no matter where we are sent -- at our own expense.
I was part of the crew that brought the quilt to D.C.; I couldn't imagine how unequal treatment would be in remote areas versus major cities and how fundraising groups could not care less about those not in major cities.
Thank you for listening. I have so much more to say but, as I approach my 25th marriage anniversary on April 20, 2015, we are still doing it all on our own.
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Read other stories in this series.