29-Year-Old With AIDS Launches Kickstarter-Type Campaign to Pay for Health Care
Valyn Calhoun posted a photo of himself, looking pale and weighing 95 pounds. "I put up a picture of my body," the 29-year-old wrote. "It may scare some, but this is something I see everyday."
Calhoun, a photographer who runs in Fort Lauderdale's music and art scenes, contracted HIV and hepatitis C, and after his insurance refused to pay for his care, he began soliciting donations on GiveForward.org, a website that enables online fundraising and is geared toward people needing help with medical expenses. It's a lot like the better-known Kickstarter, though Kickstarter's focus is on artistic projects.
According to GiveForward, the website has enabled more than $31 million in transactions. At presstime, Calhoun had raised just over $5,000 of his $20,000 goal.
Now that's he's had access to medication for a week and a half, Calhoun, who says he's "not shy about anything," agreed to an email interview about his disease and his experience.
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Here is our exchange:
Tell me about yourself -- where you grew up, where you went to school, your job, and interests. How old are you?
I was actually born in a small town in Kentucky on 3/17/83 and moved to Florida with my mom and dad before I was 1. I've come to define myself mostly through my art and photography, which keep me going every day. I always knew something was a bit different with me and didn't really find out why until exploring myself later in life. I came out when I was 15 and it moved my mom so much that she came out too. I have a great relationship with my parents.
I was always a hypersexual child, and I just thought I was "off" [until] about six months ago, [when] I started to recover repressed memories of pre-school molestation. For many years, my artistic muse was driven by my addiction to sex. It was worse than any drug I could imagine. Until the memories came back. I have not had any sexual contact since the memories returned. Six months and counting :) The man was acquitted of all charges.
When and how did you contract HIV and hep-B?
Due to the lifestyle I was living, I put myself and others at risk for many years. I may never know when I contracted HIV/AIDS and hep-B. I try not to think of my condition as retribution; I only hope to educate others.
>When did you first suspect something was wrong? Can you tell me about the experience of being diagnosed? Were there a lot of invasive tests? Who gave you the news, and what was that like? When was it?
Around a year or two ago, the first symptoms began. I had been mouth-swabbed regularly, all showing false negative results. It began with a skin rash. I was diagnosed with psoriasis and given steroid cream. Slowly but surely, new symptoms began to appear and disappear -- hair loss, vomiting bile, extreme fatigue, bone pain, mental anguish; I ran the whole gamut. My doctor suspected systemic lupus due to the amount of symptoms. After losing about 35 pounds, I went into the ER (without insurance). I went in for weight loss and vomiting bile with blood. They X-rayed my chest and sent me home. I was not yet diagnosed.
I saw that you cannot work. What kind of health insurance did/do you have? Walk me through your hospital experience and your frustrations dealing with the insurance.
I immediately started the process of finding insurance. My rep assured me that I was covered for hospital stays. I went to the same hospital with the same complaints and was immediately admitted and tons of tests were run. On 1/5/12, I was informed that I had "full-blown AIDS." The doctor smiled and walked out, leaving me in the bed crying. That was the worst part. The same doctor told me on the eighth day that insurance was not covering this and because I was a "self-pay" I would be leaving that day without HIV medication.
How did you get the idea to start an online fundraising campaign?
A friend online sent me a link to the fundraising site. Having been supported so much by my parents during this ordeal, the very least I could do was try and ask. I have received an overwhelming amount of support, and we have reached around $5,000 so far. My parents are going broke helping me, and it feels so good to be able to give any amount back.
Are you receiving any medical help currently? I.e., from Medicaid? AIDS health groups?
I was directed to the Broward House and Ryan White Foundation by the local Wilton Manors community, and they have been assisting me with doctors' visits and medication.
Tell me about your physical condition now.
I am currently five-foot-eight and 99 pounds. I'm usually around 135 pounds. My last CD4 T-Cell count was at 134; these are our "immune cells" that help our bodies fight off infections. Once they drop below 200, you are considered to have AIDS. My last viral load was very high, 4 million. That is the amount of virus in my blood. I am waiting on my next round of bloodwork to see if the medication has had an effect. I am currently taking a new drug called Stribild, which is causing controversy due to its $28,500 wholesale price tag per patient, per year. I currently take eight pills a day to clear up and prevent any infections that may arise while my t-cells are so low, but that will change as the Stribild does its job.
Medically, what is the prognosis? What are the best-case and worst-case scenarios for you and your future (not just physically but also being able to achieve hopes and dreams)?
Best-case scenario, I live a completely normal lifespan. I will always suffer the side effects of medications and find myself making my decisions around the fact that I now have AIDS. But with breakthroughs in drug therapy, we are seeing longer and happier lives in HIV patients.
My fears for the worst-case scenario: a loss of funding for people who need medication and cannot afford it. The average cost of a yearly dosage of HIV meds is higher than the average wage. Without proper treatment, a basic cold can kill. That scares the crap out of me.
Anything else about how your life has changed or how people have responded? Relationships with family/ friends/partners?
My mom has been on medical leave; she is a retail manager. My father is an apartment manager, and we have pooled our savings and sold the unnecessary. This situation has brought me so much closer to my friends and family. The amount of love I've felt from the entire community has been unparalleled and gives me hope in HIV awareness. Of course, I have my bad days, but I've been dealing with bigotry my entire life. I can only hope that by being open and direct about my situation, others will be able to find comfort during a scary time.
You are super BRAVE to share this! Anything else you want to say? Anything about stigma? Big-picture thoughts about the health-care system or these diseases or society? Lessons to be learned?
Since my diagnosis, all I can think about is picking up my camera again and spreading awareness through the community. I have always used my art to express my deepest emotions, and I would like to be able to give back to the community that is helping me through this juncture in my life. So many people are not being treated, and my heart aches for them. I just want my energy back so I can do something... Anything.
Anyone interested in helping Calhoun can donate via his GiveForward page.
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