Health Care Stories: Poz Man Turns to Generic Antiretrovirals from India as Only Affordable Option

For many Americans with chronic health conditions, access to affordable prescription drugs is a life or death matter.  The health care reform bills moving through Congress will close the “donut hole” or Medicare Part D coverage gap and end it over time, providing a tremendous benefit for many seniors and people with disabilities.  Without adequate coverage, out-of-pocket costs prevent many people from taking medications that will delay serious illness.  Like Harrison, turning to potentially unsafe treatment alternatives is the only option.  But it shouldn’t be.  A robust public insurance option that offers affordable and high-quality care will prevent individuals like Harrison from drowning in out-of-pocket health care costs and putting their health in the hands of unsafe drugs.     

“I am disabled with HIV/AIDS. I have been positive for 16 years. I am on SSDI and Medicare. I had been provided with insurance coverage by my former employer. Once I went on Medicare this employer-provided insurance primarily only covered medications but was critical to my survival. When Medicare Part-D was passed my former employer dropped all disabled and retired employees from their insurance. For the first two years this was not a problem. There were enhanced Part-D plans that, for a higher premium and higher co-pays, provided drug coverage for the entire year without a donut-hole gap in coverage. Last year for the first time there was no enhanced Part-D plans offered. I hit the coverage gap in February and was then responsible for 100% of my drug costs until I had paid $4,000+ out of my own pocket. My drug costs are about $30,000 a year. Because of my income I was unable to qualify for any assistance including ADAP, pharmaceutical company drug assistance or any other public or private program. My medications however are over 2/3 of my monthly income. I was forced to put the $4,000+ coverage gap out of pocket amount on my credit card. I am still trying to pay this off. This year I also hit the coverage gap in February and was again unable to qualify for any kind of assistance. I went without my medications until October as my condition began to rapidly deteriorate. In September I learned about the possibility of ordering generic HIV anti-virals from India. I was very reluctant and frightened to try this but as I got worse I felt that I had no choice but to try. I ordered the generic version of Atripla which is known as Viraday even though I had many problems with Efavirenz/Sustiva in the past. This was the only option of the available generics that I could even attempt to use. The total price including shipping was $265. A difficult amount for me but at least it was within being possible for me to afford each month. I did eventually receive the medication and started it in October... In mid October I ordered another month of the Viraday from India. This time however the shipment has been confiscated by US Customs. I am again very frightened and distraught and depressed. I feel that I am being murdered by my own government and that no one cares. I had insurance and access to medications until Congress passed Medicare Part D. I have been unable to get any assistance from my elected representatives, my local ASO and least of all the pharmaceutical companies. What am I expected to do? I figure that I and insurance companies on my behalf have paid the drug companies well over $300,000 during the course of my illness. Now I am expected to just die. I have absolutely no hope for the future.”  

Harrison, GA