Why is the state of CA denying me my meds??

[jeannefer56]

I hope I have put this in the correct place.  I am a newbie to this site and am very thankful to have found you all.  Plese read:

Why Doesn’t the State of California want to approve the meds that will cure my Hepatitis C?

I was diagnosed with NH Lymphoma in May of 2012 after many hospital emergency room visits and stays in the hospital.  By some stroke of luck I met a doctor during this time who went from bed to bed talking with patients and he mentioned to me about this new drug that was coming out next year for Hepatitis C and told me to inform anyone I knew to hold off getting treatment until these new drugs get approved in early 2014. Apparently these new drugs did NOT include Inferon which makes some individuals very ill.  Well, I didn’t have hepatitis - I had cancer. But I took his words to heart and did tell others.

I continued on with my cancer diagnosis and following chemotherapy treatments. I was starting my 6th chemo session when all of a sudden everything was STOPPED!  I was advised that I had tested positive for Hepatitis C.

This happened around October of 2013.  Since  I am disabled I am on medi-cal through the Alameda Alliance here in Alameda County.

I was able to get a gastroenterologist who also told me about theses new meds and told me at that time that these new meds were about 96% effective on people with my Gnome type.  Yippee!!!
I thought how fantastic is that - a 96% cure rate!!!  And no needles!!

Now, I just had to wait for the release of these new drugs and that happened the first part of this year (2014).  Now all that was supposed to happen was the Dr would submit the request for the meds and that we would be told where to go to get them since they would not be at a normal pharmacy ie: CVS or Walgreens. I thought everything was going on as planned.

When Dr Peterson submitted the request to the Alameda Alliance they denied me the medicines. Then he re-submitted and I was denied yet again, and then denied again and yes DENIED at least another time.  I had attended two classes instructing us how the meds worked and how to take them, their side effects and a lot of other information was discussed. I was excited to be able to cure this disease that I didn’t know I even had and to get back to the business of ridding myself from the cancer that was running through my veins.

I saw Dr Peterson last week. He informed me that the State of California had
“stepped in” and I’m guessing the reason to be to resolve whatever problem is going on with all these denials???

My doctor seemed very annoyed about this situation and so did all of his staff. They basically just blamed “the State” for not allowing me to get better and then advised that a new blood test was needed “for the state” and that they would send me the form in the mail. The appointment was done and I went home totally perplexed.  Wouldn’t having the “state step in” be a good idea? I asked myself…..

I was at a loss as to what was actually happening until I got online and did some research.   There is a lot of info out there and I went to the government’s CDC site to do some digging.  It seems that Hep C is being associated with people who are using illegal drugs by injection methods.  Hep C is spread through blood contact and this should be general knowledge.  It makes sense that people who shoot up illegal drugs and share needles are at a greater risk for getting this virus.  However, lots of people who did try this form of recreational drug use in the early 70’s have Hep c now. I am one of those people.  I have not put a needle in my arm or anywhere else on my body since my late teens. I experimented in 1975, and learnt my lesson.  Never again and it was never done again.  There are a few more ways that this can be spread and according to the CDC a lot of their information is not “published” but you can find it out by reading the documents on their web site.

However, I couldn’t seem to find any information on why the state of California is denying patients these new meds.  Then I got my mail and in it was the lab slip for the tests needed.  One of those tests is a PRE EMPLOYMENT DRUG TEST!  I do feel that the state is basically calling all of us with Hep C drug users!  I feel discriminated against and lied to.  Why not just ask me or look at my body for needle marks??  Instead we go through weeks -make that months - of waiting and feeling sick, anxious, depressed and now MAD!  

To me it seems that the State of California is stepping in here  and violating our privacy rights. Let alone not letting us get the medication that will let us get back to working and being a contributing part of society.  I, for one, do not like being on SSI and trying to live on about $800 a month. I want to be rid of Hep C, get rid of my Lymphoma and get back out there with the rest of this country and make a good and decent living in the working class.  

WHY WON’T THE STATE OF CALIFORNIA HELP ME TO GET BETTER AND BE A TAX PAYING ASSET INSTEAD OF AN SSI RECIPIENT????

Thank you to all who read this.  I am trying to get the word out to as many people as possible and appreciate your passing this on. There are a lot of folks who can benefit greatly by getting this medicine and all it will do in the end is save the government a lot of money

[Pamelajean1]

It's the money....

"Only for patients with severe complications

At Monday's meeting the panel of experts from California universities and hospitals voted that Sovaldi and J&J's Olysio are superior medical treatments to older therapies from Merck & Co Inc. and Vertex Pharmaceuticals. But considering their costs and benefits, a majority of panelists said that both of the new drugs deliver a "low value." Olysio costs about $66,000 for one course of treatment.
'Over time, we expect that treatment guidelines and the medical science will be what guides the discussion around treatment for a very serious liver disease — not the potential short-term budget impact.'- Cara Miller, Gilead Sciences
The experts recommended the drugs should be used only for patients with severe hepatitis complications, such as liver cirrhosis.

The California Technology Assessment Forum was funded for more than 50 years by the non-profit insurance provider Blue Shield of California, but was recently incorporated into the Institute for Clinical and Economic Review, a Boston-based research group funded by insurers, drugmakers and academic institutions. The group's board of directors includes executives from Blue Shield of California, Avalere Health, UnitedHealth Group and the Pacific Business Group on Health.
Gilead Sciences did not send a representative to Monday's meeting, but a company spokeswoman noted that it offers financial assistance to patients who cannot afford the drug and related insurance costs."

http://hepatitiscnewdrugs.blogspot.com/2014/03/hepatitis-c-california-panel-of-experts.html

[Sovaldi13Newbie]

I have to go rest now, as I finished with Sovaldi Olysio and I'm pretty fatigued. I hope you get some good answers and maybe I got in under the line. Because I too had leukemia and a bone marrow transplant...And I applied and got a denial for these med for my Hep C, then I found out who did the appealing (they are usually separate contractors) and I asked them if I could write my own letter along with their appeal and I got them. But maybe it's because of the results now coming in (I sure don't know for sure) as they are finding that this particular combo is not THAT great for all genotypes, etc. There are much better outcomes of study drugs coming soon, around November. Like I said, I sure don't know but I'm a 1b, perhaps that had something to do with my getting them? Soon there are going to be better drugs and they are so expensive, I know many states are fighting Gilead for their really expensive price and now with not stellar results (they are just finding out) for all genotypes. But my hepatologist says she is getting SVRs across the board, but not quite what they expected. We're the guinea pigs for this treatment. But don't despair , I'm not expert, there are many on this board that know way more than I do...but perhaps youre better off waiting some months for the new drugs combos? Hope some people who know more than I do chime in.