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]

Hi, as always, thanks for your well wishes. I hope things work out for you too. Went to the lawyer today, it will take at least a year but he thinks BF will get SSDI. In the meantime, we're going to have to pay out of pocket for PCP and Hepatologist to get documentation that he's seeing drs. BF saw Dr. Shankar (GI) at Broward General. He sucked!!!

Called Schiff. He suggested a 4 week NIH trial in Baltimore for Hep C & cryo patients who failed SOC. Problem is that BF's HIV excludes him from trial.

Called UM financial office, only have financial assistance for Dade Co. residents unless we get Broward Co. to agree to pay his treatment in Dade. Have forms to fill out and phone #s.

Emailed Nelson at Shands. He said that treating Hep C + cryo is "labor intensive" so BF will need Medicaid. He does not recommend anyone in Broward Co. and will see BF to get "the ball rolling". What does that mean? Emailed Shands' financial office and got response with phone # to make apt with dr. - nothing about financial assistance. Sent a 2nd email asking again.

Called Dr. Castro's office at Cleveland Clinic and asked again if he treats cryo - he had left for the day so his secretary left him a message.

All this and working full time too - I AM EXHAUSTED!!!

[lanier]

I have not seen a heptologist, I have seen 2 gastros who both suck.  a nice person recommended one at the cleveland clinic in weston I think.  I tried treatment this year and failed at 3 months.  I am fighting SSDI with an attorney now, thought it was not needed at first since I had all the test results and records when I applied.
I waited way to long to apply, I stopped working in 05' and did not apply until may this year, never even thought about it until I was really going broke and knew I could not work.  I have put in plenty to qualify, but the baloney of getting approved is such a hardship.  These SSDI people are like drowns who think you have a sprained ankle, I really almost wanted to go postal over the phone with my adjudicator when I tried to handle it myself.  I am 50 and this has been the worst year of my life healthwise, I have symptoms began during treatment that have not left and my cognition, fatigue and depression have sky rocketed.

I feel your pain and know you have so much more to deal with than me.  I have 1 child and need the income at this point to keep my home, if it were me I would run back to NY if you know you can get help there and maybe reserve some of your remaining savings.  

here is something I came across;

Patient Assistance Programs
Virtually all pharmaceutical companies have programs for low-income patients who need their drugs but cannot afford them or identify another public or private source to pay for them. Eligibility and availability varies widely. Consult the links below for more information about the individual medication you may need.
The Access Project
http://www.aegis.com/factshts/network/access/pa.html

Pharmaceutical Research and Manufacturers of America (PhRMA)
www.helpingpatients.org

HIV InSite
http://hivinsite.ucsf.edu/InSite?page=md-rr-16

I should have gone to that heptologist long ago, I have other underlying health issues, not HIV but low platelet and auto immune related illnesses and also severe fatigue and depression.  So I can not hope to re-treat until these issues are moved closer to homeostasis.  

I wish us both a brighter future and I hope we can keep writing.

Lani

[poocat]

Thanks. Will let you know what atty says today.

lanier: I posted questions above about who you treat with. Do you see a hepatologist in Broward Co?  

[wyntre9]

I have read of a number of forum people getting help from pegassist and there's another  program, as well..

If you don't already have that info, post back and I'll track it down for you.

Don't give up, cat.  I know how hard it is and how friggin humiliating it can be, feeling like you're begging for something you're absolutely entitled to.

So hang in there.  I'm glad you're seeing an attorney.  Even if you don't get immediate compensation and go on the free pegassasist program for now, it sure won't hurt to have some money come in in the future.

And you HAVE to pay your bills, please!   I understand how much this STINKS but you have to keep fighting and to do that you need a base of operation!  (an apartment, a phone, a pc . . . )

Let us know about the attorney consultation.

wyntre

[poocat]

We have been battling for 2 yrs trying to get help for him. We're exhausted, angry, frustrated, depressed and broke. I was in therapy but I can no longer afford the $40 per week co-pay. We retained an atty today and see him tomorrow but I know that even with his help, we're looking at at least a year without health benefits. I am going to now use the very last of my savings to pay for an initial consult with a hepatologist and try for free or discounted treatment after that. I can barely pay our bills so don't know how I'm going to pay for any medical care. Thanks for listening and your help.  

[wyntre9]

I really feel for you and your boyfriend.

Like i said, i guess you would say I got 'lucky' coz I'd paid into private income DB for many years and i was a public school teacher so I am covered by insurance (only after another huge fight, BTW).

But don't give up.  You are both so young.  Keep asking questions, making waves, gathering info and if you're persistent, eventually something is bound to break in your favor.

Just be prepared for a battle royale and wage it with a take-no-prospniers approach.

wyntre

PS - You might also want to look into attorney representation.  there are lawyers who specialize in SSI cases and won't ask for payment until the case is settled in your favor.

The rep from my income DB company admitted that having legal representation is pretty much the only way people get approved these days.  Regular folk like you and me generally get frustrated and confused and give up which, of course, is SSI's intention.

[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.  

[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.

[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?