Month: September 2014

a letter from Jules Levin of NATAP

collaborating for access to treatment

collaborating for access to treatment

Every major state now has imposed severe medicaid restrictions. The only potential best solution I see is a strong federal campaign key to which is the messaging. I think the key to my successful campaign from 2000-2006 to get HCV & HBV in the Ryan White Care Act was good messaging & finding the correct ears, with repeated meetings with that messaging & with those people. Key was finding the correct congressional supporters, one must be selective in who you choose to throw your hat in with, I was able to convince a select group of congressional offices that were willing to pass the legislation, many congressional offices & congresspeople & senators say they support you but they don’t, they only say they do to look good for their constituents.

I wrote the language for the Care Act & assisted in the actual language selected to be in the Care Act. Key was actual patient knowledge & experience, the clinical data & most relevant epidemiology & passionate discussions & pleas, which comes from patient/care/treatment experience & in the context of disenfranchised patient populations.

Ryan White Care Act Hepatitis C & B Language (click here for details)

Jules Levin

www.natap.org

hcv stories

Mathew Scheiner
Oberhofer, Tropic of Pisces, Mon Khmer
DISCO DIVA.JPG

Chronic Illness:
Hemophilia, Hepatitis C

How long have you had Hemophilia and Hepatitis C?
Hemophilia you are born with, and I was exposed to Hep C at about five years old from a contaminated batch of plasma for treating my hemophilia (kick ‘em while they’re down). At least I was luckier than lots of other Hemophiliacs, who ended up getting HIV in the same fashion. Historical note: Blood donations [which are the source of my hemophilia treatment] were not being properly scanned for contaminants until 1987, hence the nationwide spread of HIV and other blood-borne illnesses in that decade.

How does it affect your professional life?
Touring is “less fun” when you have to worry about “did i put enough ice in the case to keep the meds cool until we get across the Mojave?,” or “Hey guys can we stop at the hospital so I can dump my sharps container?” However, people in other bands think you’re pretty cool when they walk into the green room and you’re sitting at the table with a tourniquet on, a needle in your arm and a 60-cc syringe in hand. So, there’s that.

How does it impact your personal life?
Personally, my hemophilia (a genetic blood-clotting incapability, for those who don’t know) causes 99% of its problems for me in my ankle, so I can’t go running or play soccer anymore. I can’t even go for very long walks, I just bike everywhere. Which is why I fought hard to put the bike rack on the van before going to SXSW. And the Hep really hadn’t affected my personal life until I started treating it. Then, I had to give up alcohol and every drug, except grass and certain prescriptions. Mildly awkward social situations have come of this.

Outside of your professional and personal dealings with Hemophilia and Hepatitis C, what else would you like others to know about it?
My health insurance costs double my rent, but this year alone they have shelled out over $150,000 in the interest of keeping me alive and well. When I neglect to clean my room for a few days, the scene generally includes empty vials, used syringes, bloody needles. I have an impressive collection of fancy tourniquets from around the world.

Even though the circumstances under which I contracted hepatitis were unique to my being a hemophiliac, I recommend everyone get tested. I’m just past the halfway mark of the treatment for it and (knock on wood) am expecting to be cured by mid-March. Which is great, because although I’m currently not in a state of health emergency, I’ve already had the virus for over two decades and my liver would start breaking down in a few years. I’d just like to add that despite how much of a bummer a chronic illness may be, we are so lucky to live in modern times with modern medicine. Learning to stick myself at 14-years old, and moreover learning about patients twice my age having to assimilate into very long treatments without any certainty of a light at the end of the tunnel made me realize that we all have a high threshold for the integration of unusual things into our daily lives in the interest of survival…. reposted from paste magazine 2012….

HCV Treatment 2014 from Project Inform and TPAN

a reason to celebrate

hep c logo fuzzy

The following note was forwarded to step up to hep by Sascha Larsen-Helbing who runs the patient navigation program at Hep C Connection. Sascha has assisted so many persons to get into treatment. Please contact Sascha if you need some support with accessing or getting through treatment at 303-860-0600.

 

“Took  quite a  while but got my medicine and am taking my first pills in 20 minutes.  84 days from today hopefully I will be cured!
re: hep c treatment…sovaldi and olysio  (off label treatment)
I am taking these 2  pills only once every 24 hours   early in the morning as these  meds can have some sides,  Doing it this way I’ll be asleep and  hopefully it will be easier to cope.  I will miss a good part of the day so avoiding the sun won’t be so hard.  I’ve been on a weird sleep pattern for years so it  will be right up my alley.

I will likely be super tired  at least this first month so am allowing for 10 hours of sleep and will get up around  12:00 pm accounting for the upcoming daylight savings.  Thanks for your prayers and love. I am so excited to finally get rid of this scary and damaging disease after all these years. “

p.s. going to play this right when I take the pill !   It is a celebration for me.  Am looking forward to my new life.