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]

Isn't it  ridiculous!?! He is 41, has HIV, cryo, HEPC, thrombocytepenia, neuropathy/edema, and I'm sure more that we don't even know about because he can't get medical treatment. But, it is standard to be turned down by our wonderful federal goverment the 1st time you apply. They wrote that he cannot do heavy lifting but that he can be re-trained to do a light job, and listed his diseases as HIV, Hep C and anemia. He is not anemic!! They ignored the cryo and thrombo and those are the diseases that are causing him to be in pain and bedridden several days out of the week. I was told by an attorney not to bother retaining him until BF is turned down the 1st time. Now we have an atty working on the appeal. My understanding is that it can take years to get SSDI and he cannot not wait that long. At one point, his platelets went down to 30. His dr said go to ER. We went, they were ready to admit him and transfuse him and hook him up with Medicaid. The ER dr told me though that the hospital was not equipped to treat his cryo. They then retested his blood in the ER and his platelets were back up to 80. How can that be? They released him and sent us a $1500 bill stating that his extreme weakness was unexplained and that he needs to rest. Rest, he sleeps all day long sometimes. He went down to Medicaid begging for help and was told that single men do not get Medicaid and that according the SSA he's not disabled. Meanwhile, the office was filled with non-US residents w/ kids getting welfare, Medicaid, food stamps and complaining about it all. Sorry, I'm going on and on because I'm so frustrated.

[jmjm530]

At this point I think you have to take it one step at a time and not get too far ahead of yourself.

If you collect all your records in advance -- blood tests, scans, biopsy reports, etc -- and either bring them (or preferably send them in advance) to the hepatologist -- then you should get more than your money's worth in terms of an overall plan.

And, of course, you should write down any questions you may have including your the platelet situation.  Also, try and get hold of your biopsy slides in addition to the report. Many hepatologists will want to examine them in house.

And lastly, before you leave, take the time to clearly lay out your financial situation, and the steps you plan on taking to make it all work. Ask if they can help in some capacity such as coordinating treatment with another doctor who might offer some financial assistance. Perhaps they even know a doctor who will. And if they will give you their email address, grab it.

Good luck. Hope it all works out.

-- Jim

[lanier]

I am confused that you say your boyfriend can not get SSDI?  HIV and HCV makes no sense to me.  has he paid in enough ? are your guys really young?  did you consider getting and SSDI attorney, they will take you on retainer if you have paid in enough to the system.  I really would like to know how in the world he could be denied with these two major issues.  where did you apply and how?  
Lani

[poocat]

I think that's the plan. Plus Cleveland Clinic in FL which has a good hepatologist, Dr. Castro, and a good infectious disease dept, does have some financial assistance available. One problem is that his platelets are hovering between 50-60. That's why I think he should see someone 1st, pay out of pocket for the initial visit, then pursue free drugs. Worried that his platelets will drop to dangerous levels. He did respond to treatment with interferon only so I think he'll SVR with current SOC, if he can make it thru the 24 wks. What if he needs rescue drugs? Are those available thru pharmaceutical cos also?

[jmjm530]

I suppose one way to treat on the "cheap" would be first to get the drugs for free as explained earlier. Then invest in at least one appointment with a hepatologist -- be it Schiff or whoever -- who has experience in co-infection. Then explain your situation and maybe they can quarterback the tx with the fellow (I'm assuming a doc) who treats you for HIV. Nothing rocket science about HCV treatment, and I would think any doctor could administer the protocol IF given the correct "recipe" by a hepatologist and if the hepatologist is kept in the loop during tx.. Often a consulting doctor will not charge on phone follow-ups with another doctor. Sounds like he will have to spring for a little money but I think that can be managed.

-- Jim

[poocat]

Just a personal theory about the cryo. Believes that it's his body's way of fighting the virus after treatment. One reason we moved to FL  was his difficulties in the cold. Also, believe his sx are from all 3 diseases: HIV, HEPC, cryo. Although he is treating for HIV, UND, tcells up, so really think it's HEPC/cryo. In this real estate market, not an option to move again, barely hanging on financially now.

Jm: He treated w/ a team in NY Hospital 5 yrs ago, but they  felt at the time that he should not have treated anything - HIV practically UND, cryo low, little liver damage and no symptoms. That has gradually changed. There are drs at UM who treat co-infected pts but, the question is how to pay for it with no insurance. Told by the financial office there that he had to have Medicaid or be dade county resident. Will try again, make an apt and see if the drs staff will give some guidance for getting help.

Re: trials, there are co-infection trials but then the problem becomes cryo or not treatment naive-excludes him from every trial I've seen. It just sucks.

Thanks everyone.