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]

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.

[orphanedhawk]

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
  

[poocat]

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!!!!      

[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.

[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.

[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.

[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.

[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]

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]

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

[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.

[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?  

[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?

[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...

[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

[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.

[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]

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?

[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

[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

[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.

[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.  

[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

[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