Desperately Need Treatment

[poocat]

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.  

[jmjm530]

You can probably get free drugs from the drug companies -- Shearing or Roche. Just go their web sites and call them. Doubt very much a trial will take him due to the HIV, unless of course, tht is what the trial is studying.

Since he has HIV, you really want a doc who treats co-infected patients. Only one I'm famiar with is Dr. Douglas Dieterich at Mount Sinai in NYC. You might want to contact him and ask for a FL referral. Possibly he can even work in conjunction with a local doctor although that might mean you'd have to come up and see him for an initial consultation. Might not be a bad idea.
http://directory.mssm.edu/faculty/facultyInfo.php?id=21794&deptid=18

[mremeet]

I've never heard that interferon causes cryo, but untreated hep C does. Cryo caused by hep C can be resolved if he manages to cure himself of hep C. Cryoglobulins are basically viral antibody proteins that are the byproduct of the constant ongoing battle with HCV. They precipitate out if they drop below normal body temp and can cause a rash on the extremities (I used to get it in the winter around my ankles). But it's possible your b-friends HCV cryo may be exacerbated by HIV, after all it is another chronic viral infection and perhaps that's what's contributing to its severity (and not the interferon he took 10 years ago). Is that why you moved to Florida? In an attempt to help his cryo? the warmer weather may help with that, especially in the winter.

You should also know that geno 3a is pretty "treatable", it's a lot easier to be cured of geno 3 than it is geno 1 (which is what I used to have). So even if he isn't able to handle the burden of a prolonged, full dose regimen of ribavirin/IFN, he still might be able to permanently offload his virus anyway. Plus don't forget about the Alinia, again it has a low side effect and toxicity profile, so it may really help him reach the SVR promised land. Also, you may want to check out the "Moore Clinic" at Johns Hopkins Hospital in Baltimore. The Moore clinic specializes in HIV and HCV research. Many of their patients are HIV/HCV co-infected, and they run clinical trials all the time there. You might be able to hook up with some kind of healthcare for free there and also get access to the very latest drugs and treatment strategies (in addition to accessing the best doctors around for that sorta thing). Probably not the most convenient thing since you've just moved to FLA, but food for thought if you run out of other options (and living somewhere reasonably close to the Moore Clinic would be a lot cheaper than going back to NY). Take care...

[poocat]

The problem is that the hospital where he sees a GI (no hepatologist on staff) won't give him a biopsy because of low platelets. Even if they would, we could not possibly pay for a biopsy. Another problem is that he has cryo. He has serious symptoms that could be from liver damage and/or cryo. Our plan is: 1) call Schiff's group, pay for an apt and hope that he can get free treatment; 2) call Dr. Castro at Cleveland Clinic in FL, pay for an apt and hope he can get free treatment (Cleveland Clinic does have financial assistance if he qualifies); 3) he may move back to NYC where he automatically qualifies for financial assistance and Medicaid because of HIV status - the problem w/ this is it's way too expensive to live there, my job is here, and he'd be living on friend's couches while treating. And of course, this all depends on him deciding to do interferon (he's convinced that the Hep C + interferon lead to the cryo). What do you guys think?

[orphanedhawk]

I think your boyfriend should find out what condition his liver is in. If he has no damage then why rush to get treated?  

[FlGuy]

You are correct to review the inclusion/exclusion criteria.  If he may be excluded for criteria check back with clinical trails frequently, might have something come up that fits or check for other trials.

[poocat]

Problem with the trial is that he's not Genotype 1 and he's not interferon treatment naive. Might they take him anyway?