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Who’s to Blame?

Hey Woody,

Like your last writer (“Feeling Helpless”), I too, am HIV, at a lower-income level and have had many doors shut in my face when trying to get help with medication payments and co pays. I have applied to, and participated in, many pharmaceutical and/or hospital-based research studies in order to obtain the life-saving medications that I needed. I was faithful to the dosing requirements and never missed an appointment with the doctor. But, when the study was complete, so was my usefulness to the pharmaceutical company. Once they’re done with the study they’re done with you. It’s “no more meds and don’t let the door hit you on the way out.”

Hey Woody,

Like your last writer (“Feeling Helpless”), I too, am HIV, at a lower-income level and have had many doors shut in my face when trying to get help with medication payments and co pays. I have applied to, and participated in, many pharmaceutical and/or hospital-based research studies in order to obtain the life-saving medications that I needed. I was faithful to the dosing requirements and never missed an appointment with the doctor. But, when the study was complete, so was my usefulness to the pharmaceutical company. Once they’re done with the study they’re done with you. It’s “no more meds and don’t let the door hit you on the way out.”

I can’t begin to count how many HIV+ people I know who were denied drug assistance from AIDS services organizations (ASO) because their income was literally as little as a few dollars over the cutoff for financial aid. Even if you are on disability, or working at a job that pays minimum wages but provides no health coverage, you may still not qualify for assistance in obtaining your necessary medications because, according to the government (city, county, state or federal — take your pick), you are seen as gainfully employed or with adequate income. However, disability often puts you at a fixed income level for life and the minimum wage is not enough to live on. What are you supposed to do when the apartment you rented 4 years ago for $525.00 a month is now renting for $750.00 per month?

While your suspicions that “Feeling Helpless” couldn’t get help because he didn’t provide proper documentation may be accurate, please remember that thousands of HIV+ men, women and children are denied assistance every day in this country because of corporate politics, outmoded financial requirements and critical funding shortages. “Feeling Helpless” may fall into that group of pozzies.

-Been there myself


Dear Been There,

Thank you for showing my readers just how ‘manageable’ that “manageable condition” can be.

You’re right about all the obstacles people face in getting meds but wrong about who you’re blaming. When it comes to who gets help and who doesn’t, AIDS Service organizations (ASOs) don’t make the rules; they follow them. The rule-makers are the state and federal governments.

Example: If your state sets the poverty line for a single individual at $27,600 and you make $27,650 then good luck trying to get an ASO to help you. They’d endanger their government funding and end up unable to help anyone.

ASOs do have ways of helping people who are above the government’s “poverty line” (Emergency rent services, for example, and in limited cases, providing free meds through the AIDS Drug Assistance Program). But the truth is, you and your “manageable condition” are in trouble if you make too much money to qualify for assistance but not enough to afford insurance.

You’re in trouble even if you do have health insurance since YOU are responsible for the HIV med co-pays, which can run $50-$100 per med. If you’re taking 3 or 4 meds, that’s up to $400 a month just in co-pays, let alone the overall insurance premium.

Bottom line: Getting infected with HIV may not be a death sentence but trying to get the meds will make you die a thousand deaths.

To maximize your chances at getting help do this:

  1. Provide all the documentation asked for (like your HIV status, income, etc.)
  2. Keep your appointments and do what the case worker says
  3. If you make more than the government’s limits but can’t afford insurance ask the caseworker for guidance.
  4. If your caseworker isn’t helpful, ask for another one.
  5. If your caseworker doesn’t mention them, specifically ask for the AIDS Drug Assistance Program or Emergency Assistance Funds.


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