Speech by Brent Nicholson Earle for Private Health Insurance Must Go Coalition Rally and March

Delivered Midpoint of March Across from Aetna Insurance Company in New York City
October 17, 2007

I address you today not only as an activist but as someone who has been damaged by America’s dysfunctional health care system. I am here to add my story as one more piece of testimony in the indictment against the unfair profiteering of the private health insurance industry.

I have been living with HIV for almost 20 years and have been receiving anti-retroviral therapy for over 15 years through New York State’s AIDS Drug Assistance Program or ADAP. New York has probably the best funded and most comprehensive ADAP in the country. Over the years, the side effects from all of my AIDS medications have made it almost impossible for me to maintain a full-time 9-5 job. I am lucky to have a permanent part-time position that is secure no matter how many hours I am able to put in during any given week. Of course, health insurance doesn’t usually come with a part-time position, no matter how permanent. I am extremely fortunate to have a health insurance policy with Empire Blue Cross/Blue Shield that is paid by an expanded program under New York State’s ADAP. In 2007 the premium for that policy rose to over $14000 a year – more than half my annual salary. Obviously without this state program I would be completely without health insurance.

At this point in my life, HIV is not my only health challenge. I have major disc degeneration in my upper and lower spine from an excessive amount of running. 20 years ago this month I finished a 9000 mile Run around America to raise funds and awareness about AIDS, followed by two more ultra-marathons for AIDS in 1990 and 1994. Since then I’ve undergone three surgeries on my spine and three surgeries on my feet, plus years of steroid injections into my spine, physical therapy and a hell of a lot of pain medications. I’m often asked whether the problems with my spine are HIV related and my answer is always – only to the extent that if it hadn’t been for AIDS, I never would have run all those damn miles around America!

One of the worst side effects of my pain meds is a condition known as “dry mouth.” Not only is it unpleasant and annoying, it creates a very hospitable environment for tooth decay. Although my Empire Blue Cross/Blue Shield policy is pretty comprehensive, it does not include dental care. Over the years the only way I was able to pay my dentist was by putting the charges on a credit card. My dentist was willing to stretch out the payments but it was still $350 going on the card every month, until I had amassed well over $30,000 in credit card debt because of my teeth and was forced into medical bankruptcy. I was prepared to let all the teeth in my head fall out before I put myself in that kind of ruinous situation again and I went more than two years without any dental treatment after my bankruptcy filing – until once again ADAP came to the rescue. I’m thankful to say that I am now receiving dental care under another one of ADAP’s expanded programs at the Callen-Lorde Community Health Center. Just last week the New York Times ran a front page story about how dentistry in this country has become much more of a business than a form of a medicine. I wasn’t really surprised to read that dentists in America are making a killing while the dental health of the nation and its children is declining at an alarming rate.

Having to declare medical bankruptcy over my teeth is not the only reason I’m here to support the Private Health Insurance Must Go Coalition. I have another piece of damning evidence to add to all of the testimonials in Michael Moore’s powerful documentary film, SICKO, and other activist writings on the subject. For almost ten years I’ve managed to keep my HIV related wasting at bay through injections of testosterone and steroids and different drugs to stimulate my appetite. I was hovering at around 15 pounds underweight until my third spinal fusion a year ago this past June. It was my toughest operation yet, with four rods having to be inserted into my neck. Following the surgery my wasting became more aggressive and I lost an additional 18 pounds, which I could ill afford to lose. Last fall my doctor wanted me to start taking a drug called Serostim, which is a form of human growth hormone and is being used as a “salvage therapy” for wasting. It has to be injected daily and costs about a thousand dollars a week. I’m sure you’ve already figured out that Empire denied me coverage for the drug. And although my wasting and weight loss was well documented, they continued to deny coverage through two more appeals over the past year. My last hope was in mounting a final appeal through the pharmaceutical company that produces the drug. I think what ultimately tipped the scale in this fourth appeal was a letter from my surgeon stating that test reports showed my cervical spine was stabilized but that I had significant muscular deterioration in my neck caused by the severity of my wasting. Obviously Empire realized that if they didn’t pay now, they’d probably end up paying a lot more later when I became permanently disabled – so they finally approved coverage for Serostim – but only until the end of December, when I’ll have to go through the entire approval process all over again.

I’ve been injecting myself for a little over a month now but I think it’s too soon to tell whether it’s going to arrest the wasting. And as for rebuilding the muscle that I’ve lost, that’s probably more a matter of how much effort I am able to put into exercising, pushing through the pain in hope that I will be able to regain what I’ve lost. Of course, I’m very grateful to be able to receive this drug but I’m also really angry about the muscle tissue I lost over the more than nine months that Empire denied me coverage. I can’t help but think of how much further ahead I’d be in this battle for my health and my life if Empire had approved coverage for the drug when my doctor first prescribed it over a year ago.

And yet in spite of all with which I’m challenged, I am one of the lucky ones. Think of the millions of American children and adults without any health insurance whatsoever, whose only option is President Bush’s answer to health care – overcrowded hospital emergency rooms! Think of those poor kids in the South who died from infections caused by lack of dental care! Think of every person in this country who has suffered and continues to suffer by the private health insurance industry putting cost before care. We’ve got to fight for single payer national health coverage! We’ve got to fight for House of Representatives Bill 676 and we’ve got to keep our leaders’ feet to the flame, especially the Presidential candidates’, until we get it! Health care is a right – health care is a right! Act up!