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.  

[poocat]

We live right near Wilton Manors. He filled out his SSI application in Wilton Drive office. There is some help for people with HIV here in S. FL but in NYC, you get financial assistance, food stamps and Medicaid right away. I thought since this was federal funding that it would be the same here but NY state supplements federal funding for these programs and FL does not. BF gets free treatment and meds for HIV but they will not treat anything unrelated to HIV. Who do you treat with in Ft Lauderdale? Do you see a hepatologist in Broward Co? None of the hospitals in the North Broward Hospital District have a hepatologist on staff, which is also unbelievable. Broward General just opened a new liver transplant dept and had a great hepatologist on staff but he left. Now they actually have a liver transplant dept without a hepatologist - very hard to believe!

[lanier]

WOW.  I am so freaked to hear this is happening to you.  I see the age as a possible issue, but with all the underlying medical issues especially HIV, he should be qualified.  Have you ever been to Wilton Manners in Broward County?  They have a lovely creative community that just happens to include a large gay population.  There is  a SS office on 26th and there is some kind of office on 441 in lauderhill (have not been) I think food stamps have you been to these?  I am going to go and do some reading on HIV and the benefits, I have chronic HCV and Know little about HIV in the area of governmental benefits other than I "assumed" people would get HELP if they were afflicted.  I have never heard of a person with HIV and all the other things you are describing being disallowed.  
Talk to you soon
Lani

[poocat]

It is hard to believe but apparently you have to be literally on your death bed to get SSI the 1st time you apply. I do not know what you are supposed to do while you wait 2 years for disability. We depended on 2 incomes to survive and now 1s gone. I'm trying to find a 2nd job but can't even find 1 making $10 / hr. I could probably barely survive 2 yrs without the disability money but BF will not survive 2 yrs without medical insurance. Medicaid denied him because SSI has declared him not disabled. I've considered marrying him to get him on my health insurance but my premium would go up $250 per month, he would be excluded due to pre-existing conditions for 1 yr and would probably lose Ryan White and free medical care that he is now getting for HIV. We're really in an impossible position.

I called Dr. Castro's office at CLeveland Clinic in FL today and he charges between $150-$500 for the initial consult. His nurse never heard of cryo and will ask him if he has treated it before. I found out today that he's a GI that specializes in HEPC. Is that as good as a hepatologist???

[wyntre9]

The company that was (reluctantly and only after a knock-down drag-out with them paying my self-funded finacial DB) contacted me and told me I HAD to also apply for SSI or they would figure out what that payment should be and would deduct it from my monthly payments.

I said, OK, I'll talk to your advocates.  (They're a huge company and evidently have their own staff of SSI experts on staff)

When I spoke to them, they said it was 'normal' to be turned down for SSI during the initial application and that only after resubmissions and adjudacation by a district court were benefits paid.

I asked how long that could take and was told it was typically 2 years or more.

SO what in the world do people do who don't (like me - just a lucky fluke, believe me) have income DB, do in the meantime????????

wyntre

[Lady Lauri]

I have not read thru all these post and have to get off line and leave (will read later) but quickly.....
how on earth is he denied SSI and all that with HIV? I thought all with AIDS/HIV quailify now? Also (sorry in such a rush and may have been posted already) but have you tried Shands In Gainseville, Fl? I go there, love them! A great teaching hospital and I know they have many charity options?
Back online later, I want to read all these post.  Best to you, hang in there!
                                                             Lauri

[poocat]

He hasn't had a biopsy since1997. His platelets have been low since his 1st treatment, so drs in NY felt it wasn't a necessary risk. He did not start having any health problems until 2 yrs ago and we were here in FL. Since then his platelets have been even lower and no one here will do a biopsy. So we don't even know if it's his liver that is causing his problems. His symptoms certainly indicate liver disease but they can also be from cryo and/or HIV (altho HIV is UND currently) And, his current dr. won't give him a blood test with a full liver panel and real VL. They only treat HIV. He won't even test ammonia levels eventhough he's showing signs of those being hi. He told BF that he's the dr. He cannot go to another dr because this one's free, oh no $10 per visit. You get what you pay for when it comes to US healthcare.