TALKING POINTS

Like any coming of age story, the eight years of Shelby Smoak’s life you experience from reading his memoir, BLEEDER, invoke much of the usual inherent awkwardness and social pressure attributed young college students. But Shelby’s story significantly deviates from the norm when you factor in his medical/health conditions.

BLEEDER raises any questions/issues beyond those that an average, healthy young man or woman might face. Although it may not seem like that long ago chronologically, the 1990s were a lifetime ago for anyone infected with HIV.

Here are some issues to talk/think about when reading/discussing Shelby Smoak’s BLEEDER:

THE STIGMA OF HIV

Although advances in science/medicine were moving quite quickly in the 1990s, acceptance of those infected by HIV was not.

There was a stigma that HIV was a gay disease. Those who revealed themselves as infected, even if they were straight, were physically and mentally ostracized from society.

Teenage HIV/AIDS sufferer Ryan White was banned from his Indiana Public School.

Discrimination was commonplace on many institutional levels, from schools to state governments to the work place.

Even revealing that one was a hemophiliac carried a stigma, as many hemophiliacs contracted HIV through various routine and necessary medical procedures.

Fear and paranoia were the rules of the day when it came to HIV in the 1990s

MORAL & ETHICAL CHOICES

When do you inform a young person that they have a potentially life threatening disease? Shelby’s parents learned he was HIV positive in 1985, but Shelby himself was not made aware of his infection until 1990, when he turned 18 years old.

Would you tell a world that fears and perhaps hates you, that you were HIV positive? Shelby and his family actively chose to hide his HIV positive status from the world outside the medial profession.

When is the right time to start having sex? The 1990s were not like previous decades when the “dangers” or having sex were pregnancy or catching an STD that was for the most part treatable if not altogether curable.

How does an awkward college student tell a potential lover that he has HIV? And what are the consequences of telling or not telling? Shelby describes several of these conversations in the book.

Are you endangering yourself by keeping your medical history and ongoing treatments secret from those around you? Shelby went through college hiding his medicine and his treatments, large and small, from almost everyone around him.

FACTS & DATA

The Center for Disease Control estimates that 20,000 hemophiliacs live in the US.

Approximately 1 in every 5000 male births is affected by hemophilia, so close to 400 hemophilic babies are born each year.

Current estimates show approximately 10-15% of hemophiliacs are HIV positive.

In 1990 AZT was the only treatment for HIV. By 1998 there were other medical options, cocktails, to treat people with HIV.

The constant medical care for a hemophiliac makes health insurance an absolute must. Add in HIV treatments and even with insurance the bills are staggering.