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.  

[FlGuy]

You might try pursuing that trial  that I posted above, at least make the call.  If he ends up at least being evaluated for trial entry it might result in some labs he can walk away with. Fibroscan is a new device which is used to determine liver fibrosis. It's used like a biopsy.   There are only a few of them deployed in this country.  Schiff has one of them.  Would have to imagine that the best opportunites to investigate are probaly at UM.  Like I said, at least worth a call and if it works out, a trip to Miami.

[poocat]

Wow, $500-600. Plus he will need labs because they only do HIV numbers at his current dr. They will not do a sensitive HCV VL test, labs come back >800,000. They would not give him a biopsy because his platelets were around 60. ALT and AST in the 200s. They basically give him HIV meds and, ignore the rest. Dr. thinks because HIV undetectable, he should be fine. But, he's not. WiIl not test his ammonia levels even though he seems to have encelopathy (sp?) and dr. will no longer even look at his feet eventhough he has edema/neuropathy and extreme pain. I cannot find anywhere else for him to go to get help. And all of this, and he's not considered disabled!!! This country sucks when it comes to healthcare. How are you supposed to keep your health insurance if you can't work because you're sick? How are you supposed to be able to pay co-payments even, if you loose your job? Thanks for letting me vent.

[FlGuy]

Another thing.  You might keep an eye for 'CIRQDUSOLEIL'.  Rick posts here and is from the Ft Lauderdale area, is also coinfected (geno 1 I think) and currently in treatment.  Maybe he has some insight for you.  Low platelets are not uncommon with hcv or treatment.  More aggressive docs will monitor all blood values to avoid reducing doses are cutting treatment short.  There is a lower limit (around 25-30) at which most seem to allow.

[FlGuy]

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.

[poocat]

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.

[mremeet]

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.