Michael Emanuel Rajner

A tough pill to swallow

Filed By Michael Emanuel Rajner | March 25, 2010 4:00 PM | comments

Filed in: Living
Tags: ADAP, HIV/AIDS

As Fire Island.jpgin the life of many people living with HIV/AIDS, a few months ago, my physician placed me on a drug holiday as my body increased with resistance to the current regimen of HIV-medications. As my t-cells continued to plummet two months ago, it was time to begin a new regimen and all it entailed.

At the time, I was completely horrified and experienced a flashback to the morning in 1998 when I was curled up in a ball in agony and stomach cramps on my bathroom floor next to the toilet for 4 hours in my lower eastside New York City apartment. I recalled how violently and emotionally ill I became because of the toxic dose of horse-sized pills and the challenge to swallow just one of the 16 pills in a day. Six hours later, I called my doctor in tears to let him know I would be bringing back all the pills and we need to try something different that would not completely immobilize me and rob me of my dignity.

Back then, as I do now, I enjoy a healthy and supportive relationship with my physician who has stood by me time and time again in some of my life's darkest moments. It's a relationship where I can speak openly and candidly with my physician and be free from judgment. While I have dealt with many short lived moments of horror, I'm still alive despite multiple periods of time when I weighed 135 pounds, 70 pounds lighter than today.

During most of my struggle of living with HIV/AIDS, I've always had some form of private health coverage to rely on that would finance my road to a healthier life. Prior to my receiving Medicare benefits and utilizing some federal and state Ryan White-funded programs, I relied solely on private health coverage, and until health care reform, something sadly a growing number of Americans are denied and go without. When Medicare benefits kicked in and needed to access Ryan White funded services in New Jersey and Florida, I realized that most of the challenges that I experience are navigating a complex system of care with few safety nets. Everyone, especially people living with HIV/AIDS need to become more actively involved in their healthcare and the decision-making process for these programs impacting our daily lives.

Since moving to the Greater Fort Lauderdale Area, one of the greatest ongoing challenges I have had is the administration of my local health department's AIDS Drug Assistance Program (ADAP). I could give a litany of some of those challenges, but for this purpose of this column, I want to maintain a positive focus on an issue the health department has been trying very hard to improve.

Recently one of the greatest challenges people living with HIV/AIDS (PLWH/A) in my county were facing was simply accessing their medications from the local AIDS Drug Assistance Program. Once you were enrolled in the system you were, for the most part, set to go.

But over the past few years, ADAP clients, including myself, reported having difficulty in securing an appointment for ADAP eligibility and recertification. Individuals would call the telephone line to schedule appointments where often the voicemail box would be full, with no instructions or prompts for what to do next.

At one point a year ago, the issue became so challenging that I placed myself on a drug holiday and discontinued treatment, against my physician's advice, just to avoid having to deal with barrier to treatment. As my health declined and I struggled with thrush on three separate occasions, my choice to decline treatment proved me gravely endanger my health. When I advised my doctor of the decision, I recall look on my doctor's face as he marked in my file that he advised patient that possible consequences can be death.

Over the past few months as our local health department underwent extreme changes. While some of the changes alarm me and have yet to instill full community confidence, I am pleased that they implemented changes to their phone system; so hopefully, no one will be lost in the labyrinth of voicemail hell.

As a community, we will not discover the positive change and solutions for issues that gravely impact our lives until we as the affected community rise up, unite and come to the table to offer realistic solutions, demand reasonable change and put in the time and energy to make that offer a reality.


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Michael, a beautiful essay! No one dealing with catastrophic conditions like AIDS should be having to worry about where their treatments will be coming from. It's a basic human rights issue. Glad you're still with us and heathy and your doctor rocks.

Thanks, Michael for bringing in another side of the epidemic that isn't well-known or often-discussed. I always have a pit in my stomach for the weeks between my application and approval for ADAP- although the process in Washington State is paradise compared to the reality you describe for yourself.
I'm glad you're still here to stand up.

Regan DuCasse | March 25, 2010 9:23 PM

Man...what a journey! I'm glad you're still here and brother, can I relate!

I've got SLE, systemic lupus and it's kicked my ass down hard enough times. Huge amounts of pills, weight loss, bowel problems...and seizures.

Indeed, my friends with HIV/AIDS provided immeasurable comfort, advice and empathy along the way. We had a LOT in common.

I've beaten that bitch into a relatively stable remission, but still...

I've taken medication vacations and sometimes it worked very well.
It the early stages of new drug therapies and so on, it takes a while to strike a good balance, and even then, you never know for how long.

Tell it, Michael!
We're all the better for your experience. Excellent article and thank you!

David Futrelle | March 26, 2010 1:01 AM

Michael; I don't read many articles these days as there are so few great writers. Your article reads from your heart and held my attention from beginning to end. You are indeed an inspiration to all; including myself. Please never stop writing

David, the photo was taken during the summer of 2000 on Fire Island. A week after the photo I ended up in the hospital for almost 2 weeks, my right kidney had come close to shutting down.

In the photo is my little Sutton...he's now 12 1/2 years old.

Thanks for this account. I’m checking to determine that our local activism is properly placed.

Thanks everyone for your encouraging and kind words. As I continue to adjust to a new regimen of medications, I hope to post more entries.

Great article, Michael. Now that I'm diagnosed with Stage 3 Colon Cancer, I'm realizing the reality of health care costs. It sucks!
I feel like I have excellent care at UNC Cancer Center but every day I dread opening up the mailbox to find more doctors' and hospital bills. Trying to get some financial assistance. We'll see what happens since I'm not totally dirt poor (yet). Since UNC is a public facility, they will not refuse treatment regardless of ability to pay. I guess I'll be payuing them $50 a month for the rest of my life...lol. Definitely, you have to get care from public facilities because private care is unaffordable.
Stay sweet,
Nikki

And to think states are considering cutting funding to this.... If we took all the money spent on the wars and spent it on public health, no one would have to go without basic health care.

Michael, thank you for sharing. I really can't imagine what you go through and your continual struggle with ill health. I wish all the very best. May you have many more years of healthy living. Thank you again for your honesty. Best regards, Elizabeth

Your writings are indeed an inspiration. Hope you continue writing to inspire more people. keep the faith and stay healthy! We need more people like you.

Hey Michael

This was a refreshing wind of a blog post to end up on. I rarely read blogs today since it too much rap out here.

I dont know anyone (that I know of) that suffer from hiv/aids adn the hardships you have to trough in your life.

I know this post is over a year old but I just thought I drop a line and tell you to keep fighting the good fight, and I hope you still with us.

ps. I hope you dont mind I dropped a link to a site of mind.

-T

Hey

Reading this makes me so grateful to be raised in socialist Sweden. Free healthcare all over and the standard is high as well.

It feels good that I have something to fall back on in case something should happen to me.

Keep the good fight Micheal