waiting list for Hep C treatment in MA

Where are you?

I think there are "lists" in lots of places that are more in order of who is sickest. The meds are expensive (hard to get I'm not sure???). In some Canadian and UK constituencies, you need to be in desperate need of treatment...ie those who have cirrhosis already. They are trying to "save" those folk' lives.

Say an area with a strong public health program...if you treated everyone with Hep C....well, at 100,000+ USDollars per patient, you could bankrupt a public health system pretty quickly. It is said that 3 million to 10 million American's may have Hep C....many just don't know it yet. There has been very little information to discourage behaviors that transmit that disease. The press is hysterical about somethings, but 3 million to 10 million SICK PEOPLE is all hush hush.

There are indications that more treatments, perhaps ones that will put downwaard pressure on costs, will be available in coming year(s). Newer treatments are promised that have shorter treatment regimens and thus could be less expensive. So maybe those who acquired this disease recently or who had no advanced fibrosis/or cirrrhosis could wait. They will not be "desperately ill" for some months, even years.

I can see the reasoning from a financial perspective. But I hate to think anyone who could avoid damaging their liver further would have to slide downhill to save dollars.

But money does not grow on trees...so the economics of this plays into the forumula. Those with GREAT insurance in the US seem to get the drugs. Those with tons of $$$ in some countries can buy retail from various distribution channels and get the drugs. Or so they say on this site.

The rest of us are at the mercy of the programs available in our areas. My partner, 3.5 years post transplant was Stage 3 Fibrosis (the one just before Cirrhosis, again) qualified for Sovaldi and Olysio this March. He is truly blessed.


Mama Lama

I'm sure David will pop in. He is a MA resident. He did Interferon and Riba a while back to get it over with right after transplant. It will be interesting to hear his view. MA has a strong public health program. ML

Thanks for popping in David....you are our MA expert! ML

If your liver isn't cirrhotic and has little or no fibrosis, waiting a year shouldn't be a problem. Have you had a biopsy and if so, what stage is your liver at?

It took 35 years for my liver to start to crap out.

Your turn will come, em! Glad you are in the process of getting treatment. Did you know they just approved another companion drug this week, Olysio? It is used with Solvaldi instead of ribavirin. But the newest one is the one pill per day, Harvoni. Mama Lama's husband treated with Olysio/Solvaldi and is now Hep C free. So much good news in the Hep C treatment world this year. Big Hugs,

Haven't been around for 8 days. Was working on a job off island, with no internet connection.

Who is your insurer. In MA, we have an Insurance Commissioner. You might try calling them. I had BC/BS and had to threaten them a number of times with lawsuits, plus, my docs wrote letters to them. It worked, but took a lot of energy and time. You have to advocate for yourself. Insurance companies will deny treatment and make you crazy in the process. Stay on them! Don't quit!

emwell2.

I totally agree....hopefully you will get treated before you get too ill. What are you experiencing now? Can you work? Let us hear from you,

I found a very interesting site for you...the presentation about Hep C treatments in MASS 2015. Take a look:

www.hivhealthreform.org/wp-content/uploads/2015/04/Examining-HCV-Treatment-Access.pdf

I wonder where you are in their criteria? The chart of how many need treatment and how many have been successfully treated is quite an eye opener!

Hugs,
Mama Lama

Have you had a recent test of the condition of your liver? You mention that you had a biopsy a long time ago. Now there are less intrusive and much less expensive tests (fibroscan, fibrosure) that are excepted by the insurance companies when you try to get the new medicines. Once you have your test score you can determine if your insurance company will approve you for the medicine. Lots of the companies (including many in MA) will only approve you if you are in stage 3 or 4. Even if you are in an earlier stage you still can fight the decision. You may be able to show that you have an "extrahepatic manifestation" of Hep C. These are specific medical conditions that research has shown are likely caused by Hep C. You may be able to use your doctors and medical records to show that you have one of these conditions and may get approved for the medication even if you are not in stages 3 or 4. Months ago I posted a detailed outline of how to make such an argument (since i was successful myself and have helped others using this info.) and organizations that may help you. Hopefully one of our leaders can put it back on the top for you to see.

Link for getcured's info on Hep C med appeal. I also bumped this up to the top so others will find it easily. Big Hugs


www.healingwell.com/community/default.aspx?f=25&m=3315494&p=1

emwell,
Just a quick note...
If you are GT3 or GT4, new treatments approved yesterday. See this link.
www.healingwell.com/community/default.aspx?f=25&m=3460711 Big Hugs