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Author Topic: My HIV/HCV Story:  (Read 6638 times)

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Offline Peter McLoyd

  • Newbie
  • Posts: 1
My HIV/HCV Story:
« on: September 21, 2015, 03:07:04 pm »
In 1977 I was hospitalized after sustaining a work related hand injury that required minor surgery. The day after completing the pre- surgery lab work, I was visited by a nurse who explained one of the test indicated elevated liver enzymes leading to additional test and the discovery of what she referred to as "non-A, non-B hepatitis”. The nurse also explained that there was no need for worry, as the infection was acute and in general quite mild.

It was twenty years later however, after being diagnosed with HIV that I learned that the prior diagnosis was now identified as Hepatitis C.  The HIV diagnosis quickly became my primary point of concern, and I was exceptionally fortunate that new treatments for HIV/AIDS and the age of HAART were underway. I like, thousands of other was anxious to get started managing my HIV infection.
All thought my HIV infection was under control and well managed I was informed by my medical team that the Hepatitis C infection had become chronic and an area of concern. I lived with the uncertainty of this co-infection until 2005 when I was offered a combination of Pegylated Interferon and Ribavirin to treat the Hepatitis C infection. All though my medical team was clear about the potential side effects and uncertain outcome I choose to begin treatment. I had experienced some side effects from the HIV treatment regimens; however, this was an entirely different experience.  The side effects were severe and included fatigue, headaches, insomnia, irritability and depression. 

I was working full-time, yet determined to follow-through with the 48 weeks of treatment  I’m not exaggerating when I say that this was one of the most difficult years of my life, and without the love and support of my wife Kathy I doubt that I would have sustained the effort. Kathy, who is a nurse by training accompanied me to medical visits, was patient during those moments when I was most cranky, encouraged me in my darkest moments of despair and depression and was a fierce advocate on my behalf. Unfortunately with all that we went through, the end result was that the infection was not eradicated.

Fast forward to 2014, and once again I was offered the opportunity treatment using a six month regimen with one of the newly improved therapies. I’m happy to say that this time the treatment was successful, there were little to no side-effects from the medications and today I am cured of Hepatitis C!

It’s truly amazing that we now have multiple options to combat this chronic and potentially life threatening infection. However, significant access to treatment challenges, that are directly related to reimbursement criteria by some state Medicaid programs is effectively cutting off access to treatment and the right to be cured. 

These concerns and issues were highlighted in a recent study by Robert Greenwald the Director, Center for Health Law and Policy Innovation and other colleagues from Brown University Department  of Medicine, Rhode Island’s Miriam Hospital, Treatment Action Group (TAG) and the Kirby Institute of Australia that examined  reimbursement criteria for sofosbuvir (Sovaldi) the medication I was prescribed. 

Mr. Greenwald is quoted  in the article stating that “Ultimately, we found that access restrictions are not based on scientific evidence, current treatment guidelines or clinical data,” said co-author and Harvard Law School’s Center for Health Law and Policy Innovation Director Robert Greenwald. Greenwald adds, “Notably, 74% of the 42 state Medicaid programs for which information is available limit treatment to individuals with advanced fibrosis or cirrhosis.”  Such restrictions contradict the American Association for the Study of Liver Disease and the Infectious Disease Society of America treatment guidelines which support treatment for all HCV-infected persons, except those with limited life expectancy (less than 12 months) due to non-liver-related diseases. My home state of Illinois has absolutely the most restrictive access guidelines in the nation and that has to change!

Since shortly after my HIV diagnosis I’ve worked at an HIV primary care clinic that also includes HCV treatment. I’m proud and excited that my organization allows me to focus my advocacy and policy efforts not only on HIV but HCV as well. I’m committed to support and contribute to the fight for treatment/cure access for other residents of Illinois and beyond. Now is the time to incorporate and use the many lessons learned from three decades of HIV/AIDS advocacy,we can and must clear a pathway for treatment access for all people living with HCV. Together we can get this done!
Here is the link to the referenced study: http://annals.org/article.aspx?articleid=2362306

Offline KimInTheForest

  • Member
  • Posts: 1,968
  • Believe in yourself
Re: My HIV/HCV Story:
« Reply #1 on: September 27, 2015, 01:42:23 pm »
Thank you for sharing your story , Peter - and in such detail. I found it very interesting. And CONGRATS on now being cured of Hep C !!! What 6-month treatment was it that finally cured you?

All the best,
kim
Kim Goldberg (Nanaimo, BC)
1970s: Contracted HCV (genotype 3a)
2015: Cured with Harvoni + ribavirin (12 weeks)
MY STORY: https://pigsquash.wordpress.com/2016/01/28/undetectable-my-hep-c-story/

Offline MaryC

  • Member
  • Posts: 117
  • Life is not a sprint; it's a marathon.
Re: My HIV/HCV Story:
« Reply #2 on: September 30, 2015, 08:01:49 pm »
Thank you for sharing your story Peter.  And for all your valuable advocacy work! So glad to hear that you were finally cured of HCV. 

Mary
GT 3a
Dx'd 4/15 not known when contracted
Labs 7/15:
-VL 537,000
-AST 32
-ALT 41
-Fibrosis score 0.46 (F1-F2)
Started tx 9/17/2015 with Daklinza + Sovaldi
6/6/16: 24 week EOT SVR!  Cured!

Offline beto

  • Member
  • Posts: 548
  • "no risk it, no biscuit"
Re: My HIV/HCV Story:
« Reply #3 on: October 22, 2015, 10:32:13 am »
Thanks peter,

Very dramatic story with a wonderful outcome.  Thank you for your advocacy and fine words.  I was rejected by insurance 3 times and finally acquired (tx) during the fourth denial process.  I also am in the cirrhosis category.  Took a strong letter and a fight.  What amazed me is that one is reduced to being an "insured" and the frontline claims people are schooled in making it as difficult as possible.  I never got the feeling that anyone ever considered that I was someone's father, husband, brother and uncle that has struggled for years yet managed to raise a family and compete in a professional world of the "uninfected".  Continue your work my friend... thank you again.
« Last Edit: October 22, 2015, 10:34:39 am by beto »
HCV/nonA,nonB acute phase 1975
HCV detected active 1990
HCV persistent chronic diagnosis 1995
1995 liver enzymes mild elevations
1996 Biopsy F2 fibrosis
treatment naive geno 1-A
2000-to early 2015 Viral load 150, 000 to 800, 000
recent liver enzymes before treatment alt/ast 59to209,  Fibroscan F4,cirrhosis
start tx Harvoni 7/11/2015
6.5 week-UD-ast/alt 25/25
9wk-UD-ast18 alt23
10/3/15 completed tx
11/5/15 new fibroscan f0-f1 amazed
6wk EOT UD ast/alt 20/20
12EOT-UD-ast/alt19/21
25wk-SVR! 19/18

Offline lporterrn

  • Member
  • Posts: 1,984
  • LucindaPorterRN
    • LucindaPorterRN
Re: My HIV/HCV Story:
« Reply #4 on: October 22, 2015, 06:55:52 pm »
Peter - I would love to see this as a HEP story. It's easy to do and you've already written it! Please consider this. http://www.hepmag.com/hep_stories.shtml
Lucinda Porter, RN
1988 Contracted HCV
1997 Interferon nonresponder
2003 PEG + ribavirin responder-relapser
2013 Cured (Harvoni + ribavirin clinical trial)
http://blogs.hepmag.com/lucindakporter/

Offline Seymour Akshun

  • Member
  • Posts: 3
  • Hep C and HIV activist
    • HIV, Hep C and other bus rides
Re: My HIV/HCV Story:
« Reply #5 on: November 08, 2015, 10:07:44 pm »
"Access restrictions are not based on scientific evidence, current treatment guidelines or clinical data"  It is time to challenge these access restrictions
Two unsuccessful interferon-based treatments
Treatment with DAAs in 2015
Currently awaiting SVR

 


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