Availability of Harvoni (or other new Hep C cure) for long-term US visitor

[Nino]

Friends:

My mother is Hep C genotype 1B w/ cirrhosis. She was treated in 2004/2005 in Eastern Europe with Peginterferon + Ribavirin, but she did not respond. Since Harvoni or other new cures won't be available there for a couple more years, we are now desparately looking at options of getting access to Harvoni-like medication.

If she were to come to US to visit me (I'm US citizen), does anyone know if there is a way for her to get access to Harvoni-type medication (MySupportPath requires "proof of residence", which means having SSN, ID, etc, which she doesn't have)? Even though I'm a US citizen, getting her over here on immigrant visa and getting her covered under Medicaid or some other private insurance will take a long time, and we don't have that time.

Clinical trials in US and Western Europe require knowledge of a local language, which she can't learn at the age of 70 (and no clinical trials with Harvoni are existing in former Yugoslavia, where she comes from).

Any thoughts are appreciated.

Nino
Desperate son of Hep C patient

[BattleTheBeast]

Hi Nino,

Where does your Mom live today? I also think you can call mysupportpath and ask them your questions, although they may not be able to help directly perhaps they can point you somewhere to get her help.

There's also some additional information on Gilead's website for Global Access

http://gilead.com/responsibility/developing-world-access

Mel

[Nino]

Mel,

She lives in Bosnia.

I wonder if my US citizenship status enables us to cure her with Harvoni-like medicine at affordable price.

Thanks.

Nino

[Mike]

Hi Nino,

Unfortunately, there are no easy answers for your mother's specific situation.

The problem is the cost of the new Hep-C medication, which run anywhere from $90-150 k per course of treatment. Because of the costs, many insurers (including Medicade and Medicare) are rationing the treatment and only approving the medication for those who meet a specific clinical picture (severe liver disease and so on).

Since your mother is not a US resident/citizen, she would not be eligible for federal assistance and would not qualify for health insurance under the Affordable Care Act.

This doesn't mean there is not a path for her; but it would be a complicated and difficult one.

She might qualify for humanitarian reasons, and contacting the drug manufacture makes sense.

I would imagine your mother would have to be in the US for any type of assistance since it doesn't sound like the medication is approved in her country of origin. She would also have to be an established patient of a treatment provider willing to advocate for her and provide the required medical documentation supporting the urgent need.

Although this would be a difficult path, it may not be impossible.

Best wishes, Mike

[Nino]

Mike,

Thanks for the detailed answer.

Correct, I'll be bringing her over on a long-term tourist visa. The plan is certainly to  contact all 4 major drug manufacturers for this medication, and some people suggested going to different hospitals and asking for humanitarian/charitable contribution for the new drug.

If there was a way to buy her private health insurance using Tax ID (ITIN #) with pre-existing condition, that could also be an option (not cheap, but cheaper than spending $100K.

I just checked Gilead's list of developing countries to be covered by generic version of Harvoni, and non of ex-Yugoslav countries (inclusive of Bosnia) were there. It doesn't look good.

Regards.

Nino

[BattleTheBeast]

Nino,

I did some more searching and you may want to reach out to:

http://www.elpa-info.org/

or the World Health Organization http://www.euro.who.int/en/health-topics/communicable-diseases/hepatitis/news/news/2014/04/hepatitis-c-treatment-guidelines-issued

As Mike said there is no easy road but perhaps if you can get some contacts for her locally they can assist as well as Gilead.

[Nino]

Thank you.

I will call both entities.

Nino

[Nino]

Oh, boy, Europe is so behind in organized Hep C treatment with Harvoni.

Called both ELPA and WHO and they only so far know of commercial options that cost no less than $60K for 3-months treatment.

I'm continuing to hold the line for Harvoni US (if they ever pick up), and I keep calling Gilead Germany office for "compassionate use" of Harvoni.

Thanks all for tips. Other thoughts are more than welcome.

Nino