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Avatar universal

Desperately Need Treatment

My boyfriend has Hep C, cryo, and HIV and no medical insurance. He treated with interferon in NYC in 1997 and relapsed at 6 mo PCR. We're now down in FL where there is ALOT less help. He is getting treated successfully for HIV thru Ryan White but has been denied medicaid and SSDI. He needs to treat NOW for Hep C and cryo because he is having symptoms to indicate that these are getting worse. We have exhausted all avenues in Broward County, FL. The public hospitals do not have a hepatologist on staff (can you believe that!?!) and the hematologist that he saw never heard of cryo and said there was no treatment anyway (not true). Does anyone know if he can go see Schiff in Miami without insurance? If so will they help him get whatever financial assistance he needs? I called the financial office there and they said he needs Medicaid or to be a Dade County Resident. Any other suggestions would be appreciated because we're feeling helpless and hopeless.  
33 Responses
96938 tn?1189803458
take a look at this

http://www.clinicaltrials.gov/ct/show/NCT00353418?order=1

It's a clinical trail and UM is one of the sites.  For other trials that might be available go to www.clinicaltrials.gov.  For searching, key in hepatitis, miami or maybe hiv, miami.

I went to see the Schiff gang last year, there are 5 hepatologists there.  My insurance wold not cover the visit so I had to pay out of pocket.  Another alternative could be Shands Clinic in Gainesville (affiliated with U of Fla).

You might need to do some sleuthing. Good luck.
163305 tn?1333672171
I don't know about doctor's costs. Some places have charity care available but you'll have to ask.

I recently learned that Quest, a major lab, has a program for those needing help paying for labs. Again, you will need to ask. Be dilligent.

He can get the meds, interferon and ribavarin for free through either from the pharmaceutical
companies.Call either:
Roche, @ 800-526-00625 or 877-757-6243
Sherring Plough @800-222-7579

I have a lot of leftover neupogen used for low white blood cells, a common side effect of the treatment. I'd gladly send it to anyone in need. There is another forum member who has leftove procrit, used for low red blood cells. He's also looking to pass them on. So coming here is a good idea if you're short on anything.     Good luck
  
Avatar universal
Thanks, you guys are great. I have been reading posts for awhile and have done alot of investigative work. Unfortunately, BF does not qualify for most trials due to co-infection and may not be able to even treat SOC because of low platelets, but he has to do something. We've been trying to get him help for over a year, with absolutely no success, watching him get sicker and sicker. No one seems to care.

FlGuy: Can you share approx. how much that visit with Schiff cost? Was the advise that you got worth paying for the visit? Of course, we are having financial difficulties because he is no longer working but I do have a little savings left, worth saving his life.

Orph: Maybe if Schiff sees him, we can then investigate the free help thur pharmacies and Quest.

THANKS!!!!      
151263 tn?1243377877
Also you can get access to free treatment drugs from the pharmaceutical companies. All you have to show is financial need, and you don't have to be flat broke either - people with houses and cars and jobs qualify. Look into the "committment to care" program, or contact the drug company's directly via their websites and they should be able to set you up. Also be aware there is a drug that is already available called Alinia that originally was not developed for the treatment of hep C, but recent testing suggests it may be a powerful HCV antiviral too (and its already FDA approved and available right now). Plus it has a very low toxicity and side effect profile. You b-friend may be able to take this drug along with IFN and riba, and if the riba causes real problems with anemia or platelets, he might be able to reduce his riba dose with Alinia in play to help keep him on the SVR track. If he's not genotype 1, that also works in his favor, non geno 1 patients are generally much easier to treat/cure than non-type 1's. Obviously if he'd drinking or drugging, he better stop that too. Good luck.
Avatar universal
Thanks for more info. He doesn't drink or drug. He treated with interferon only in 1997 at NY Hospital (that was the SOC then). He is a 3a and had 0 liver damage but was talked into treating by drs. He also did not have HIV nor cryo at that time. He was an early responder, had little side effects, and was declared cured. He was athletic and healthy before treatment and didn't even know anything was wrong with him. He has never been the same since taking interferon. At 6 mo. PCR, wham, virus back with a vengence, suddenly HIV+ and suddenly cryo. Has not treated again because immediately had low platelets, all kinds of immune system problems for years, and wished he had never treated. He does not want to ever do interferon again but I'm afraid that he has no choice. Anyway, any other help would be appreciated.
96938 tn?1189803458
To see one of those doc you can expect to pay $500-$600 for a consult.  I did not require any additional lab/blood work since I brought a bunch of recent records with me.  It was basically a doc's time.  In my situation it was worth it.  I had relapsed from first treatment (hepC) and I went there to get guidance for my treatment doc and me as to how to proceed to make the next try successful.  One added benefit is that if one of the docs sees you, you have sort of a point of entry or access for the trials that they do there.  And they are involved in a lot of them.  After my visit, a year ago, they've called me a couple of times to inquire about my interest in specific trials.  They collect high-level data on the patients so they can source the trial population. Oh yeah,  you'll wait about 5 months to get into see Schiff.  Slightly sooner for some of the others.  But, Schiff literally wrote the book on liver disease.
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