Yup.  I have joined the over 50 million Americans who do not have health insurance.  My private health insurance dropped the dead weight- me- at the end of last year.  Here’s how it all went down…

Let’s start at the beginning.  I was covered under my father’s health insurance and, due to hemophilia, I was considered disabled as a child. That means that I was supposed to be covered for life, even after his retirement in 1999 from his state job.  At the time, I’d just moved into my own place, and Gwenn I had fallen in love.  Also, I was very sick and unaware of any of the logistics of my health insurance.  My main priority was getting my health back on track.

Somehow, the “covered for life” thing fell through the cracks with my father’s employer and Blue Cross.  As a result, I was off my father’s insurance, and instead of righting the wrong, Anthem Blue Cross Blue Shield decided to cover me under an individual policy. Over the course of ten years, I was hospitalized twice, but based on my fairly high monthly premium ($1200) the company was actually making money on me, not losing it…

…fast forward to 2010.

During World AIDS Week in December, my busiest time of the year, I was late with my monthly payment by a few days.  The payment was made, then a couple of weeks later when Gwenn went to pick up my HIV medications, the pharmacy informed her that I wasn’t covered.  We called, and Anthem said reapplying was easy.  We filled out all the info online, and then…

I was denied.

I was told it wasn’t due to HIV- it was because I’d been exposed to hepatitis C in 1994 and had hemophilia.  Even though I’ve never had any problems with hep C, and that five years ago my doctor told me I was a non-progressor due to how many years I’d been infected with hepatitis C with no signs of increased liver enzymes or damage.  They’d probably had me on a shortlist of chumps to be dumped, and jumped at their first chance to get rid of me.

So now I’m uninsured.  I should probably be scared, but I’m not.  On a spiritual level, I feel relieved to no longer be associated with corporate thieves.  Sure, they covered me well when I was in a jam, and didn’t screw me over except for the fact that they didn’t honor the “covered for life” portion of my father’s policy and financially raped my beloved commonwealth of Virginia each month in my name.

But hey, sometimes those facts slip through the cracks.  Sometimes ethics slip through.  And people, too.

Just like me.

Positively Yours,
Shawn

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For anyone out there with a bleeding disorder and an iPhone, there’s a great new app ($1.99) that helps you log your bleeds and infusions and sends that information to your doctor.  It’s called “Hemolog”, and it was created by Michael Schultz. It’s now available on the iPhone Apple store, click to learn more.

Positively Yours,
Shawn

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I take a lot of pride in my work, which is educating college students on the proper use of condoms. I don’t do this alone- my wife partner, Gwenn, speaks alongside me.

She is HIV negative, and I am HIV positive.

If you’re reading my blog, you probably already know all of this.  One of the reasons I take so much pride in my work as an educator is because it is personal; we are sharing intimate details of our life together, and how a condom (and someone with HIV) can be a working part of a healthy sexual relationship.

I’ve been using condoms for the entirety of my adult sex life, and I must say that the condom is my friend. Since I was diagnosed so young – at age 11 – I never had a sex life pre-HIV infection; it’s always tagged along as a third wheel. These days, I have a healthy respect for the long journey I’ve taken, all the doubts and fears of rejection I had to overcome before I realized- in the context of that dating world- that, “Hey, I’m a catch, too!”

A recent study has shown that HIV negatives (“negatoids”, as I call them) can use ARV (Anti-retroviral) treatment to prevent themselves from contracting HIV. There’s a lot of excitement surrounding this study, and one would think that someone like me would jump at the chance to experience sexual intercourse without a condom for the first time… a re-devirginization process of sorts.

Sounds exciting, huh?

But part of living with HIV for me has been the reality of what it means to take these medications. I’ve been on ARVs for twelve years now, and the side effects can be pretty taxing. I’ve changed medication three times, not because it wasn’t working, but because of side effects, which included nausea, diarrhea, fatigue, confusion… despite being on a combination that presents fewer side effects, I wouldn’t want Gwenn to endure any of this just so I could satisfy a sexual curiosity.

I started on meds when I was upgraded to an official AIDS diagnosis in 1999, when my t-cells crashed to below 40 after hovering around the 200-mark for years as my viral load shot through the roof like the pyrotechnics that kick off a pro wrestling television show. I’d also lost close to forty pounds over a four-month period. Just before my crash, I’d met Gwenn, and we’d fallen in love. Part of me felt like I was dragging her along for a ride I didn’t really want to be on myself.

Without the medication I wouldn’t have survived. I am deeply thankful I’ve been given the opportunity to forge a wonderful life with Gwenn, and also the ability to keep up with a somewhat hectic travel schedule. For sero-diverse (I hate the term “discordant”) couples like us, I wouldn’t recommend pursuing a condomless sexual relationship unless the intent is for procreation, not recreation. As for the public in general, in instances where it is impossible for a female (or male) to negotiate condom use, because the “dominate” male refuses, using ARVs could be a safeguard. That goes to a deeper question of creating a worldwide society where everyone- including sex workers- is sexually empowered… secretly ingesting potentially toxic ARVs before having sex isn’t the most ideal way to get there, but if it prevents an HIV infection in a certain situation then I am all for it.

Positively Yours,
Shawn

PS… it’s a complicated issue, here are two Comments from the Poz news article linked above:

Dave, SF, CA, 2010-11-29 16:32:49
Wow. People are being infected with HIV in alarming. Condoms have not provided an end to the epidemic. Why we can’t pursue a cure for HIV while developing more effective prevention tools? The fact is that resources for treatment implementation, treatment research and prevention should all be fully funded and not pitted against each other.

Richard, Cleveland, OH, 2010-11-29 00:58:17
Four thousand people languish on ADAP wait-lists and HIV cure researchers have taken to youtube to petition the public for funds. Meanwhile, the NIH uses OUR tax dollars to fund a study which will benefit people who choose to put themselves at risk. The only thing more bewildering than why the government has funded this study is the question of why everyone is excited, rather than infuriated.

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Before I announce the results of my Labtest Contest, I have to admit that I wasn’t thrilled with my decision to give away my sweet hat.  I even took to my Facebook page, urging friends to vote so that- should they win- they could then turn around and hand my the hat as a Christmas gift.

As it turns out, that isn’t necessary!  I am keeping the hat.

Any other time, this would be the good news of this particular blog post, but that is overshadowed by the surprisingly vital number of t-cells from last month’s doctor’s visit: 662! That is the highest they’ve ever been since my HIV diagnosis in 1987.  It really is a great cap to a year that, health-wise, was light years ahead of last year, which saw some medical tomfoolery that included weeks of colds on and off, and a holiday hospital stay due to an adverse reaction to hemophilia medication.

“Hey Shawn, that’s great and all, but why do you get to keep the fucking hat?”

Great question, collective subconscious.

Well, the closest guess was from an unlikely source in the form of an anonymous Commenter (“Anonymous Coward”, but they signed in under the email “devil@devil.com”) that posted:

“666! *devil horns*

TAKE THAT, JESUS HAT.“

This act of cyberterrorism makes any of the Wiki-Leaks antics pale in comparison, because in winning the Labtest Contest, thus giving me the excuse to keep the hat, Satan has thrown a trusted competition into turmoil.  I’m not sure if anyone will step forward to guess next time, knowing that a promised prize can be snatched away so easily.  I’m sure there are many that are wondering whether I posted that, having known the results before I announced the contest..

No way, that totally wasn’t me. For real.  I did laugh when the post came in, and the reason why I was begging for guesses on Facebook was in the hopes that Satan would be taken down.  It wasn’t until no one came close that I realized that, in winning the Jesus hat, Satan himself was giving me the greatest Christmas present of all… my own hat, and the cover to claim it.

Actually, good health is the best present of all.  I’m really thankful for all these t-cells, which give me the energy I need to go out and educate with Gwenn and just enjoy life. I really do get a kick out of all of you guessing on my t-cells- in my youth, as a newly diagnosed kid and then teenager with HIV, I feared those test results like you wouldn’t believe, and hated nothing more than getting labwork done.  I joke around a lot, but I don’t lose sight of the journey it’s taken to get here.

And I really love here.

Positively Yours,

Shawn

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I grew up as a huge fan of horror movies, and the series of Friday the 13th movies were among my favorite.  Jason Voorhees and his machete justice inspired me and my friends to purchase a plastic hockey mask and play out the movies every time the calendar reached that sacred date.

The first movie is about his mother, avenging her son’s supposed death at the hands of “distracted” (sex-obsessed) teenagers who were supposed to be watching the young Jason at Camp Crystal Lake.  But Jason was really alive, surviving in the woods, likely watching his mother butcher those poor campers.  Not sure if he was waiting for his roll of toilet paper to run out or for the calendar to reach April 1st before he jumped out to show his mommy was safe, but either way he waited too long- thus witnessing the last camper and the decapitation of his mother.

That, of course, set off a series of sequels in which young Jason grows up and continues the Voorhees family tradition of avenging a loved one’s death.

So how does Jason’s story relate to AIDS?  Was he part of a top secret Reagan Era abstinence-enforcing unit?  That sure would explain his penchant for cutting romantic encounters short. And, in writing the above, is there something in the origin of Jason’s story that tells the saga of the hemophilia community’s bloody crossroads with the AIDS epidemic? Parents of the children who were infected with HIV through blood product treatments banded together with the rage of Jason’s mother, learned the wrong-doings and failings of the institutions sworn to protect them and then sought justice and answers.

Perhaps I’m overthinking it?

Either way, there’s a new documentary out on the hemophilia community’s history with HIV and other blood-borne illnesses.  It’s called Bad Blood, and it will be available on DVD on World AIDS Day, December 1st.  I’ll be posting a reminder as that date nears… in the meantime, if you’re out camping and you hear something rustling around in the woods… well, my best advice is to use a condom, and hope that you are able to finish up before any uninvited guests join the party.

Positively Yours,
Shawn

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While Senators and Congressmen are on break, they’re taking the opportunity to hold town hall meetings to discuss the healthcare reform that is being proposed.  The insurance industry is also taking advantage of the opportunity as well, mobilizing their forces and rallying folks to kill any discussions of the real life consequences/concerns about of our current profitable-for-some system.

The news coverage of these town hall battles has been abundant.  Here’s a clip of “Smirky” Sean Hannity praising a “concerned citizen’s” outburst at one of these meetings.

I’ve been watching some clips on The Rachel Maddow Show, so when I heard that my Congressman, Tom Perriello, was going to be holding these meetings, I had to travel 10 miles up the road to Ruckersville for… The Ruckus in Ruckersville!

The sign-holding that greeted me upon entering the Ruckersville Elementary School reminded me of the live pro wrestling events I am so fond of.  I know how hard it is to make one of those things and have them be legible from more than 100 feet away.  And there’s no spell-check with a bold tip Sharpee.  So a little of the magic of the town hall meeting was stripped away when signs were being given out to people on both sides of the debate.

Lame. 

My attitude is that, if you really think “Obamacare = Death Sentence For Grandma” is such, you should have some Sharpee ink on your hands that said you put in the time.  Actually, that sign was sloppy, and I had no questions as to whether the man holding it was the arteest.  I know, I know, “Shawn, why didn’t you get a picture of that?”  Well, I don’t have enough clotting factor to brave that photo op and, quite frankly, the sign was kind of scary.  His grandma probably does have a death sentence- the hard-earned kind.

But that, for some, is the point.  To scare the hell out of people.  One of my Tool Academy Alumni, Rep. Virginia “Crazy Like A” Foxx, got on board to ring the death tolls for the elderly.

So, what exactly happened at the Ruckus in Ruckersville? 

About 250 people gathered.  The local news said that the majority were conservative, but I’m thinking that most of the people who weren’t sneering or shouting were in favor of something being done, or getting genuine questions answered by their representative in the House.  Perriello himself said- when the one microphone they had on hand wasn’t shorting out- that as it stands now, he’d vote “No”… but wants to be a “Yes”.  He seemed open to a good plan, but not willing to just sign anything because he’s a Democratic congressman, having voted no on the Bailout and yes on the Stimulus.

He was boo’d for the Stimulus, which he thought was necessary to prevent the entire United States from falling into California’s fiscal position.

I don’t pretend to know everything about the healthcare reform, but I do know that whatever goes through will not put Sarah Palin’s child with Down Syndrome in front of a Death Panel, as she stated on her Facebook page.  The scare tactics are out of control as to what could happen if our evil government tries to encroach on Mister Roger’s Hugs & Healthcare monopoly, and irrational fears are being stoked because there’s a lot at stake.

What bothered me were people who grandstanded on the mic.  I wonder where they imagined they were as they spoke- on cable talk show?  Jerry Springer?  The mic was supposed to be used for a question before being passed to Perriello, but most times it was taken hostage.  Maybe Bill Clinton should moderate all these debates… okay, bad idea. 

But so is the idea of handing someone a microphone.  In pageants, the host always holds the microphone, and for good reason- it’s not un-American to cut some blabbermouth off.  If it’s good enough for Miss America, it’s good enough for Ruckersville Elementary School.  Plus, the event was only an hour and about 50 people lined up to ask a question.  So when one ass asked 3 questions, and didn’t even get to the first one until the five minute mark, it was quite painful.

Probably the most succinct person on the mic was a guy with Down’s Syndrome.  He had a stutter, that cheap-ass microphone didn’t help his cause.  I’m not being a dick, that’s how it went down, and I’m telling this story not to be a dick, but for a reason.  Glad you’re back with me.  He told Tom that he would like the healthcare reform to not overlook those with mental disabilities.

Everyone clapped.

When Perriello said that the VA was a federally-run health care system that has provided the best healthcare for our veterans because they deserve nothing less… everyone clapped.  My question is this- don’t we all deserve decent healthcare that doesn’t go up 20% from one year to the next? 

A self-described “conservative leaning” man in his thirties was upset that some in attendance wore blue tape on their arms to show support for reform.  He said that he’s had a couple friends who were diagnosed with cancer, and came out of treatment fine.  He was worried about the financial toll of healthcare reform affecting our nation’s ingenuity…. All I could wonder was how he would feel if those friends didn’t have decent healthcare and had to sell everything to cover their chemotherapy because their insurance “found a loophole” and decided to poke their dicks through it and subsequently screw their client into the poorhouse? 

There’s no quick fix, but something has to be done, and real concerns over what sucks about the proposed bill need to be heard, studied and rectified.  I have faith my Congressman, and wouldn’t wish his job on anyone.  I mean, really, he kept his cool.  Even when he was talking about the 6-figure expense of a woman who has a child premmaturely and how decent prenatal care could lessen the likelihood of a child being born early, only to have some idiot shout, “Abortion!”

Maybe it was as bad as the clips on TV warned me.  But still, overall, aside from the morons, I was glad I went.   The people who spoke, whose minds were already made up one way or the other, seemed transparent.  Perriello did a good job of explaining the reality of the health care system, both already in place and what is being proposed.  If I can think of a cool sign to make I just might go again tonight, when he does it all over again here in Charlottesville. 

Maybe I’ll make an “I’M HERE TO SAVE TRIG PALIN!” sign.  Or maybe I’ll just go to listen and learn, and hope something happens because I fear the position that other positoids- who are walking “pre-existing conditions”- face with our current health insurance industry.  Doing nothing is great if you got it made- and I think that’s why so many resources are being put into spreading fear and lies among people for whom not a whole lot would actually change.

As for Palin’s comments, in my America, “Death Panel” should only be used when referring to the panel of judges on American Idol.  And I’m talking about the classic panel of Simon, “Dawg” Jackson and Paula Abdul.

Positively Yours,
Shawn

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It’s been a full week since I got sick.  Have I been to the doctor?  No, but don’t worry, this isn’t a Perez Hilton situation.  “God, I’m bleeding!  I should call the police!”  I have a viral infection, not bacterial, which means the only thing I’d get at the hospital would be a bill.  (Contacted doc via email, he concurred on my viral suspicions.)

My friends get worried when I go down for the count like this.  But I just got labs done, and all my numbers are great.  T-cells are steady in the high 500′s, VL is detectable but under 48 copies.  It’s just a bug.  The real tragedy here is that I missed going to Roanoke for Gwenn and I’s annual Miss Virginia trip.  We’ve been there every year since 1999, when I made it there to see Gwenn compete despite really being sick with close to 100 t-cells.   This year a contestant, Chinah Helmandollar, is doing the comedic monologue similar to the one Gwenn did when she competed in 1999.  Gwenn is now officially a pageant legend!

But wait, that’s not to say I haven’t carved out my own niche in the last decade.  I hosted a pageant last fall, and judged a pageant where two girls were crowned.  If either of them win tonight, I plan on collecting royalties.  At the very least, I’ll solicit a discreet donation to Decker’s Daily Coffee.  Aside from those contributions to pageantdom, my real mark has been my uncanny ability to predict the top finishers…

Every year, I make a poster that I unveil before preliminary competitions in Roanoke.  Since I wasn’t able to be there this week, I emailed it to our pageant buddies.  And now, for the first time, unless I’ve already done this and forgot, I am unveiling my prediction here!

(The reference on the poster to last year’s “misstep” is that neither of my two picks in 2008 made the Top 5.  Probably the most embarrassing moment of my life.)

But this weekend is all about returning to my rightful glory.  Not only are these two ladies going to finish at the top, my 2008 Person of the Year, Mike the Miz, has been getting a lot of heat in the WWE. Tomorrow he is wrestling the company’s biggest star, John Cena, at the Bash, a pay-per-view I am not getting because I am so confidant in a dominant Miz victory.

Nothing will help me get over this cough like a little redemption- er, redempshawn.  So go get ‘em, tigers. You, too, can watch the Miss Virginia pageant, live and streaming at 9 PM EST.  (The ladies pictured on the poster, by the way, are Caressa Cameron and Caitlin Uze, respectively.)

As the Miz would say, tune in, because it’s going to be AWESOME.

Positively Yours,
Shawn

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(Thanks again, Stacia, for the rejuvenating coffeez!)
See my band play in Charlottesville on July 11!

Today was National HIV Testing Day.  Know your status and, positoid or negatoid, be healthy!

Today is World Hemophilia Day!  If you’d like to observe the 20th anniversary of World Hemophilia Day here’s what you can do this weekend.

- Hug a Thinblood:  Not too tightly, but not too soft, either.  Cyberhugs are good, too.

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Apparently there was a lot of muffled laughter about The Swatchmen, a superhero group I will lead into battle the day after I am cured of hemophilia.  (Read the original blog here.)

Well, the Swatchmen Facebook group is bursting at the seams with 48 members, one of which already has their alter ego ready to go- The Confusinator!  

I imagine we’ll break the 100 mark by the time that cure rolls in.

You may want to join us.  I have a lot of pent up thickblood envy that I am planning on unleashing once I am cured.  So join or, as the Confusinator would put it, “Consequence the suffers!”

In all seriousness, who knows when a cure for hemophilia will happen?  The science will take time, I’m sure.  I joke about being cured, but I have mild hemophilia, and stay away from the temptation of joining the local rugby league, so the impact of the disease on my adult life is minimal. 

Still, the enormity of the advances made from just before I was born to the potential of what awaits in my lifetime is a pretty wide swing.  From people being able to manage bleeding episodes by infusing concentrated blood plasma, in effect going from a “victim of disease” to a superhero (The Infusinator, anyone?), to the horrific consequences of HIV infection… to being cured.

That’s a lot of science, human error and human triumph in the story of those who have lived with hemophilia or “thinbloods”, as I affectionately refer to those with bleeding disorders.  (Shout out to my peeps with Von Willebrand!)  And I eagerly await the day when there is a cure, but I hope that lessons learned are never forgotten.

If they are, then maybe someone will have to answer to myself, The Confusinator, and lots of former Infusinators.

Positively Yours,
Shawn

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The Associated Press ran a story yesterday about a report on the tainted blood scandal in Britain, which you can read here.

In Britain, 5,000 hemophiliacs were infected with HIV and hepatitis C, a third of whom have died as a result. The House of Lords (not a trip-hop band, unfortunately) member who headed the report stated that these infections are the worst treatment disaster in the country’s health care system.

“Long after alarms had been founded about the risks of obtaining paid-for blood donations from communities with an increased incidence of relevant infections, such as prison inmates, this practice continued. It is difficult to avoid the conclusion that commercial interests took precedence over public health concerns,” the report stated.

The non-governmental report pinned a significant portion of the blame on U.S. companies for collecting blood from the prison population long after it was obvious that this was a high-risk donor source. The AP article ends with the following: “This inquiry is a nonbinding investigation that will not directly lead to criminal charges.”

OK, no criminal charges- thinbloods know there will be no accountability. But the folks who were in charge of making those terrible decisions should, at the very least, have to sit down for an interview with Ali G.

Positively Yours,
Shawn