Hep C Discussion Forum

Most HCV sufferers in the world are genome type 1 and can be treated with either sofosbuvir or the sofosbuvir/ledipasvir compound (Brandnames:  Sovaldi and Harvoni,) possibly with ribavirin supplements.  Unless there are specific MEDICAL reasons why a genome type 1 patient cannot be treated with these medications, it is my belief that any NON-MEDICAL reasons should be either ignored or discounted.  Most insurance companies and (in the U.S. at least) State-sponsored healthcare programs are loath to cover the insane cost of these drugs and usually require patients to undergo therapy with something less expensive, such as Viekira Pak, usually in combination with ribavirins such as Rebetol.  V-Pak, ribavirins, and most of the new, experimental drugs for HCV are rife with side-effects, ranging anywhere from just unpleasant to nearly intolerable to possibly life-threatening (especially in the case of V-Pak, which the FDA warns could cause total liver failure and death.)

If one CAN be treated with Sovaldi or Harvoni, then that is what the average genome type 1 HCV patient should DEMAND to be treated with, in my opinion.  The regimens are simple, fast-acting, quite effective, and have virtually no side-effects.  I urge people NOT to volunteer to be Big Pharma lab rats, and NOT to let insurance companies and pharmacy benefits managers dictate what medication they should take for their HCV.  These are decisions that patients and their treating physicians should handle, not some bureaucratic geeks that are more interested in the bottom-line than the health and well-being of the patients.  Cost and insurance is NOT a real problem for either Sovaldi or Harvoni.  Generic forms of these drugs can be ordered from an informal "buyer's club" in Australia for less than $1500 for a 3-month supply. These generics are manufactured in plants in India that are U.S. FDA-approved and are under licensing agreements with the maker of the name-brand versions. They are molecule-for-molecule the same thing as the name-brand, and importing these medications does NOT break any laws. Even with all the inspections and checking of lot numbers and such that U.S. Customs, the U.S.P.S.  and the FDA does with each package, the medicine can be airmailed to one's home in just a few weeks.

I had Hep-C for almost 25 years.  I always said NO to treatment options over the years because I did not like what I heard when it came to side-effects, length and complexity of the treatment process, and especially the dismal "cure rates." When I heard about sofosbuvir, I became interested and started paying attention to news about the further development of the drug. Then Gilead Sciences, the corporation that owns the rights to Sovaldi, came up with Harvoni.  This one-pill-a-day treatment was exactly what I needed for my genome type 1-A hepatitis.  By this time, however, the Hep-C had really become a problem for me.  I was sick so often that I couldn't hold down a full-time job and had to eke out an existence doing temp work when I felt well enough.  My income was so low that I qualified not only for food "stamps," but also for state-sponsored health insurance for those below the poverty line. The HMO would not cover the $96,000 cost of Harvoni, and required me to undergo treatment with Viekira Pak instead (which, with manufacturer's discounts, was half the cost of Harvoni.)  But I was not about to play their game.  I had already obtained a supply of generic Harvoni from India and convinced my very supportive doctor to monitor my treatment on it.  My first viral load test was in late February of 2016. With my meager income, it took me several months to save up the money I needed to get the generic Harvoni. My total cost was....$1415. I had a baseline viral load test the day before I started taking the drug at the end of May, and was dismayed to learn that it had increased by almost a third in that time. When I had another VL test at the end of Week Two, though, I was pleasantly surprised to find that it was almost completely undetectable. The only side-effects I noted was a dull headache that was taken care of by drinking about a gallon of water a day. Other than that, it has been a breeze. My next VL test is next week and I'm certain that it will read as undetectable and that my doctor will tell me to stop taking the medication.

Back in March, I instructed my doctor to subscribe Harvoni, even though we both knew that the state-sponsored HMO would shoot it down. It was that original subscription that I used to obtain the generic. And since I am on a state-sponsored program, the HMO's denial of prior authorization for the Harvoni is a matter that I can and HAVE filed an appeal on.  At a hearing before an administrative law judge, scheduled for the beginning of August, I intend to convince the court that the way my HMO handles HCV patients is badly in need of reform, and that coverage should be extended to patients who personally obtain much cheaper generic forms of HCV medication from overseas.  If successful (and I have a great deal of confidence that my logic will prevail,) the judge will order the HMO to reimburse me the $1415 I spent to get myself cured. This would set a legal precedent in this State that could affect others here who are victims of HMOs and pharmacy benefits managers as well as the disease itself.