The Shovel Ready to Bury Me: Economic Thinning of the AIDS Herd

Anyone who says chasing benefits is a full time job is not exaggerating.

It’s a way to generate profit by thinning the herd, and only a minority representing the most able, determined and industrious of the herd will make the cut.

by Michael Scarce
San Francisco

I continue to read news stories about national economic woes, which typically include vague but consistent mentioning of the disparate toll taken on “those most vulnerable,” such as the disabled, elderly, and veterans.

I am one of those most vulnerable. I am unemployed, have AIDS, reside in a city with one of the nation’s highest cost of living, and in a state suffering some of the most severe budget cuts.

Statistics aside, I’m not hearing or reading much about others like me, despite our numbers. I am certain part of the silence is due to shame: in being jobless, not making ends meet, or a reliance on government assistance. Another reason includes the reality that a life of unpredictable crisis means one rarely has the luxury of opportunity to sit down and write about it.

What follows is my account of living under conditions of precarity, with awareness that I am a target sited firmly in the cross hairs of a system designed to eliminate me. I do not claim to be representative in any way, in large part because I keep finding ways to survive. I have been able to adapt, navigate, and challenge a system that has transformed from evasive neglect to direct hostility against those most vulnerable. When times get tough, Darwin prevails, and survival of the fittest is now in full swing. All of this unfolds when “people like me” are most in need of the very safety nets being slashed away as a solution to problems that are not alleviated, but merely shifted to those least likely to resist bearing the burden.

If they sound overly laden with dates, details, and technicalities, it’s because they are. These are the day-to-day stories I know are commonly experienced by others but rarely shared.

A few weeks ago I received a letter from the company providing my COBRA coverage, notifying me that all of my health insurance had been canceled, including dental and vision plans. The reason cited for cancellation of my coverage was failure to make monthly premium payments by the deadline. Because I had made timely payments, this seemed like an error, so I called the company for an explanation. It turns out that my previous employer had made a change in their health plan on December 30th, retroactive to take effect December 1st, without bothering to tell me. The change included a monthly cost increase of $175. Premium payments are due the last day of the month for coverage provided. On December 31st, the day after my employer made changes to the plan, my payment had fallen short because I had no knowledge or opportunity to pay the difference. As the result, my health plan was terminated, also retroactively, effective as of November 30th. Between that date and receipt of the termination letter in February, I received thousands of dollars of medical services for which I am now responsible to pay, in addition to the loss of health insurance. Ironically, my former employer provides support and services to promote the health of HIV positive gay men. The COBRA representative tells me the cancellation is final and there is no way to reverse what has happened.

In addition to eligibility for social security benefits due to my disability, I previously had access to a health coverage program named MediCal, which is California's version of Medicaid for people who are both disabled and the poorest of the poor. A few months ago, I visited the pharmacy where I pick up my monthly supply of HIV medications and other prescriptions. Some of the medications previously covered by MediCal had been rejected for payment. Upon asking the pharmacist for a reason, he explained my MediCal coverage had been terminated, even though I had never received any notice to that effect. Several weeks later I received an unexpected letter notifying me that my MediCal coverage had been instantly reinstated as the result of a class action lawsuit I knew nothing about.

Shortly after the reinstatement, I began to endure a series of statewide government audits conducted of MediCal recipients. The audits are explicitly intended to make cuts in California's budget in the midst of economic crisis. The first audit demanded a litany of documents, including those I had already provided to begin receiving MediCal, such as a copy of my original birth certificate. In addition to bank statements, a copy of my driver's license, and a personal written statement from anyone generous enough to provide me with any form of non-financial support such as free food or housing, they also wanted a photocopy of my Social Security card. This seemed especially petty and bureaucratic given the only information on the card is my name and Social Security number, and my MediCal hinges upon being a recipient of Social Security benefits.

The most recent demand for documentation was postmarked February 25th, which I received late in the afternoon on Friday, February 27th. The letter threatened termination of my MediCal if the enclosed 18 pages of forms were not completed and received by Saturday, March 7th meaning the latest day I could safely mail them was the following Wednesday, March 5th. I had less than one week, and only three business days, to provide detailed medical records and respond to questions about everything from a description of my daily activities to the last fifteen years of my employment history. At the time I received the letter, most of the information I needed was packed away in boxes while in the process of moving to a new apartment that is more affordable. Although I began postal forwarding before the move, I continued to sporadically receive important mail at my old address. I now live in fear of missing even a single letter that could spell disaster for my health or income.

Last week I returned to the pharmacy again for my monthly supply of HIV medications and was told I could not receive them because my MediCal had been "frozen." After a few phone calls, I discovered MediCal had stopped coverage because they believed I was still receiving COBRA, which should be providing payment for my medications.

Luckily, I was able to meet with a benefits counselor at a local nonprofit AIDS service organization within 24 hours, despite their own budget cuts and the flood of others like me seeking similar assistance. The counselor faxed my COBRA cancellation letter to a contact they had at MediCal, who estimated the computer system would reflect the correction four days after my HIV medications should have been refilled. If you know anything about the need for antiviral treatment adherence to prevent a drug resistance that eliminates future treatment options, you can understand my anxieties around having surprise prescription delays month after month.

The above examples are only a few of many. If they sound overly laden with dates, details, and technicalities, it’s because they are. These are the day-to-day stories I know are commonly experienced by others but rarely shared. I liken the whole process to retail store rebates.

Stores love rebates in large part because they bank on the fact that a percentage of people will fail to follow their exact instructions by throwing away the box with something one needs to include with their claim, losing proof of purchase, not circling and initialing the rebate item on a receipt, missing the firm deadline, and so on. They count on an additional percentage who simply forget or don’t bother because it’s too complicated or bothersome. It’s a way to generate profit by thinning the herd, and only a minority representing the most able, determined and industrious of the herd will make the cut. As my herd begins to dwindle and some of us disappear, we are chalked up to cracks in the system or the victims of unfortunate circumstance, marked only by the consequence of emergency room visits, homelessness, or mental illness.

Let me be clear in saying this is not a complaint. Quite to the contrary, I am incredibly grateful for all that I have, including every benefit and service I receive. I am thankful that I was not experiencing a bout of depression or recovering from outpatient surgery as I scrambled to submit complicated paperwork in less than a week’s time. I take comfort in the complex filing and record keeping system I have developed that includes every postmarked envelope and diary logs of each phone call. I am fortunate to have an Internet connection, a knack for researching detailed policies and regulations, and live in a community with HIV-related services that have not been decimated beyond helping me.

Anyone who says chasing benefits is a full time job is not exaggerating.

In addition to my day job in personal benefits management, I work overtime conducting a search for paid employment. I am optimistic about my ability to eventually recover from financial destitution and regain secure health coverage.

But even though I remain hopeful for the coming attempts at economic stimulus, it’s difficult to see beyond the near future, in which it seems the only shovel I am likely to encounter is the one ready to bury me.