There's Nothing Scarier than Losing Access to Your Meds

I lost coverage for my HIV medication for 64 days, and it was one of the single most frightening episodes in my life. But the conundrum of losing access to your medication can be better solved if you remain calm in the face of danger. Take control of what you can control, but push aside the worrying and fear for the hurdles that you have no control over. You'll be much healthier that way.

Not long ago, I moved from Los Angeles County to Riverside County, California. Putting together the paperwork for my primary and secondary insurances was always confusing, but I've always considered myself generally responsible about taking the necessary steps to ensure that my paperwork was in order. Changing counties meant that I had to update my information for Covered California, the California marketplace for insurance providers under the Affordable Care Act. It also meant that I had to update the information for the assistance I need to cover the soaring cost of insurance premiums and copays.

But this time, I was in for a wild ride. A series of miscommunications that led to missing paperwork and deadlines caused me to lose my prescription assistance. By the time I was finally able to get a refill on my prescription, it had been 64 days that I had gone without any kind of HIV medicine. It was utterly terrifying.

Back then, I wish I had known that temporarily losing my medication wasn't going to be the end of the world, even for someone who is HIV-positive.

The success of Stribild, the daily pill I was taking, hinges upon the strict daily adherence to the patient's drug regimen. HIV patients are constantly told not to skip even a single day of Stribild and other daily pill regimens, because of the risk of building up an HIV drug resistance. HIV's unique ability to mutate and adapt to drugs is one of the reasons why the United States and other nations failed to develop effective HIV medicine for many years. This is the reason why I became overwhelmed with stress when I slowly realized that I wasn't going to be able to get a refill.

I had already used up a 30-day emergency assistance cushion from a wonderful service that helps HIV patients get their medicine when all else fails. But it would take another two months before I was able to get all of the necessary documents put together. The case worker who took my case, it seemed, asked me certain questions as though I was trying to take advantage of government handouts. There was nothing I could do to get the documents I needed faxed to where they needed to go. Later on I found out that unnecessary holds had been placed on my account because of that particular case worker who no longer works there. I scoured the area for HIV resources and I had applied, or tried to apply, at five or six.

I had rashes appear on my elbows, and I convinced myself that it was an indication that the virus was progressing and that my health was plummeting. I couldn't acquire my primary insurance let alone my copay coverage, so

When I had finally gotten a refill, I told my doctor what had happened, and he checked my blood work several weeks later. My CD4 count was still in the 700's, and I had not developed a resistance to Stribild. In fact, none of my fears were real. The rashes that developed on my elbows were probably a result of stress itself.

Recently in Los Angeles, patients have been turned away from pharmacies or dropped from assistance programs altogether because of a change of contract in a state-run AIDS assistance program. The AIDS Drug Assistance Program (ADAP), which pays for medication costs for over 30,000 low-income HIV patients, switched pharmacy and enrollment contractors. This caused a chain reaction of complications for many patients. A report by Kaiser Health News indicated that patients weren't able to get their medication in a timely manner. In March, the contractor responsible for enrolling patients into ADAP was fired for putting thousands of HIV patients at risk. It would be the third major contract reversal in two years. My message to those patients is the same message to all HIV patients: Keep calm. You're not going to die. Not in this day and age.

Organizations like ADAP save lives for those who can't afford to fork over incomprehensible five-digit annual medication costs. It's part of a 30-year-old system designed to keep HIV patients from losing their medication. In 1987, HIV patients couldn't afford to pay for their AZT just as patients can't afford their medication now.

Many of these problems wouldn't exist if HIV medication costs weren't inflated by pharmaceutical greed. Raising HIV drug prices up to 5,000% is “the new normal.” Obviously more major changes are headed our way in the American healthcare system. The chances of getting cut off from HIV drugs are higher than ever. Healthcare reform will inevitably cause some patients to have gaps in their drug coverage.

The actual problem of losing my HIV drug assistance was nowhere near as life-threatening as I had imagined. If you were diagnosed after 1997, chances are, you have the luxury of access to combination therapy that can keep you alive for a long, long time. If you find yourself in a situation where you lose your coverage, relax, you're going to be alright.