How to pay for life-long immunosuppressants

[okarol]

I still get confused about what to plan on in Jenna's future. She is 6 months post kidney transplant (thank God and her donor!) and is doing great. She currently has Medicare, Blue Shield (through my husbands Cobra) and Medi-Cal. Her Medicare coverage will expire 36 months following transplant. At that time she will be responsible for paying for her immunosuppressant meds which run about $13,000 per year.

The hope is that she will fully employed with a group insurance plan, or a full-time student where she may qualify for some insurance through college (I am not sure if at 24 years old that our family health insurance would also cover her as a dependent?) -- or she could be married to someone with a employee health plan, or pay this expense out-of-pocket. If she is working part-time she may not qualify for an employee plan, but may make too much income to be eligible for Medi-Cal. I have tried to find out about purchasing a health insurance plan but I get varying answers on the issue of a pre-existing conditions and her ability to qualify.

There is currently a bill proposed by Congress that would extend Medicare for immunosuppressive drugs for the life of a kidney transplant. Patients would continue to receive these drugs under Part B of Medicare with the usual premium, but would not have access to other Medicare services or coverage. This could take years - if it ever happens - so for now it's not an option.

Most of the people I know who have had transplants were already through school or employed, so Jenna's situation is a little unusual. She is working 2 days a week answering phones at an office (Yay! her first job!) and is taking one class at present. I don't want to project too far ahead, but also want to help her prepare for what's to come in the future regarding these life-long meds, which are essential to keep the organ from being rejected by the body.

The end of her Medicare coverage is still 2 1/2 years away, but the past 6 months have flown by, and it feels a bit like a ticking clock. It's hard to imagine squeezing in a college degree and full employability into the next 30 months! I would love to hear any suggestions - thanks!

[MyssAnne]

This is what worries me as well, about having a transplant.  I agree, NOW is the time to be thinking of it. She may be running into roadblocks with employers unable to add her to their insurance. I don't know how insurance companies feel about transplant patients.  Anyone know?

[KT0930]

I've been very fortunate that I've always been covered either by my parents or my husband's insurance (yes, I got married very young the first time). When I got divorced, I did have to go on Cobra for a very short time because I was unemployed. It was extremely expensive, but it covered what I needed.

I have since gotten a full-time job at a small company that, for awhile, offered Blue Cross/Blue Shield to its employees. The way pre-existing conditions clauses were explained to me by the rep is as long as you have had continuous coverage (her medicare counts) for a certain number of months before they pick you up, and there was no lapse in coverage greater than 30 days, then the group plan should pick you up with no problems. If she is able to find a full-time job before her medicare expires, then medicare will provide a certificate of continuous coverage upon request.

I know this doesn't help in the job/school problem, but at least now you'll know she CAN get insured through group coverage if she's employed full-time.

[BigSky]

Most if not all the companies that make the immune suppression medications have programs where they will give them for free or at a reduced cost if one qualifies.  One needs to be below  a certain income level for it to occur.

This should let you enter information and be able to see if one qualifies for the patient assistance programs from the drug companies.

http://www.rocheusa.com/exit.asp?url=http://www.pparx.org

[highlite36]

Ahhh...yes....those dang drugs!  Well, here's what I learned.  I lost my kidneys at 19 and was transplanted at 21, so I had to learn everything really quick as well.....  Yes, Medicare will take care of things for three years afterwards, however, I was told that the state would pickup the slack that the primary insurance and medicare did not cover.  That included doctor's visits as well as medications.  So what I would have to do was keep my assets amount below the limit.  And that would make sure that I was covered.  It's harder to save because I can't go over a certain amount and certain things will count against me....but I've begun to realize that I'm better off this way until I find something better.....On top of that, the HMO that I belonged to when I became fully disabled was a policy that was held by my  mother.  In it, there is a line that says that if I became fully disabled BEFORE I turned 21, then the policy would require that the HMO give me permanent full coverage as long as my mother held onto the policy.  So in the end, it turned out to work for me because I became fully disabled six months before I turned 21.   

[Black]

My guess would be that anyone on these expensive drugs would be best served by going to work for some branch/office of the government to get the health benefits.  My former sister-in-law works for the post office and her health coverage is great.  If still attending college, go part-time, but keep that government job!

[Wattle]

Just a question here.... If you have coverage of any kind government or employer, how much are you out of pocket per month for transplant meds? What is the out of pocket expense per script?

  Our system is a little different. We are still out of pocket around $30 per script. Unless you are a low income earner.

[Romona]

You would have to check into your prescription plan. It depends on how many drugs you would require afterwards. I am very, very lucky. I have  great plan through my employer. My costs are very manageable. I also take a small about of drugs compared to some.
I take one anti-rejection and preventative antiobotic. The rest that I take are prescription strength suppliments. I do take one to keep my blood pressure low to protect my new kidney.
It is great that you are thinking ahead and looking into the costs. Right after a transplant there are so many drugs, most are short term and get cut. It can be "Sticker Shock" when you see the cost.
Hope this helps. Take Care.

[highlite36]

Just a question here.... If you have coverage of any kind government or employer, how much are you out of pocket per month for transplant meds? What is the out of pocket expense per script?

When I was still transplanted, I really didn't have much to afford.  I was taking three immunosupression drugs, three anti-infection drugs, multiple heart meds, and I was at that time taking meds because I had a stroke as well......I took maybe 25 pills a day..... but my monthly cost was no more than $12 a month for ALL of my drugs.  The state required that I pay $3 for name brand and $1 for generics with a MAXIMUM of $12 per month.  So if at any time I reached that $12 limit, all other pills that I needed to get for the rest of that month was covered by the state.  It was nice to have that state coverage because it helped me out in the end.  Before I received state aid, my bill EXACTLY was $124 per month and that was with my prescription benefits.  So all in all, it helped to have some medical assisstance after the transplant.......

[Rerun]

Karol, her drugs may cost $13,000 a year now, but it will become more.  These drugs cause other things like high cholesterol, high blood pressure, bone disease etc.... Before my kidney failed my drugs would have cost $40,000 a year without insurance.  Just so you know!!

Her best bet is to get on with the Federal Government.  A full-time employee has a buffet of insurance companies to choose from and there is NO, pre-existing condition clause.  You are covered.  There is a small waiting period after full-time employment but it is short.  AND if her kidney would fail in the future (God Forbid) the Feds would give her a disability retirement with full benefits. 

She could work for the US Post Office, United States Department of Agriculture (which includes Farm Service Agency, Forest Service, Rural Development etc.

http://www.usajobs.opm.gov/

[st789]

So much info.... Thank you everyone.

[angela515]

My first transplant I was only 21 so I was not working before it or anything, so I just had Medicare for my coverage for my anti-rejection drugs... Luckily I found a job that I got full medical benefits from day one and so I only paid $5 co-pay.

Right now, I have Medicare and Blue Cross and Blue Shield as my secondary and I have a Part D Prescription Drug Plan that I have NO co-pays on my medicine... so for now, all my meds are free (YAY), but that's due to my income (SSDI) being within a certain range... I plan on getting a job with benefits before my 3 yrs is up.. right now I am going to shool.

[st789]

This question is for Rerun or anyone in here that had apply jobs through usajobs.opm.gov/.  How do I approach in applying for it and gather enough information such as interview process, working conditions, and etc.,

Thanks in advance for any feedbacks because I saw a Food inspector opening and I like to give it a try.

[ahamner]

I have group insurance through my employer that is administered through BC/BS. Among other drugs I take Cellcept and Prograf.  My Co-Pay at this time is $20 per month for each of these drugs.  However I just learned these drugs have been put on a list of "specialty" drugs which will require a $100.00 a month Copay each beginning in 2008.  They are presently classified as a preferred maintenance drug.

So my out of pocket cost for these two drugs will increase to $2,400 next year from $480 this year.  They are selling this change on the basis that the drugs are an expensive and unnecessary choice like injectable vitamins.  The real reason is they are expensive and the people making the decisions don't take these drugs and thus they are not personally affected by the change.  It allows them to not increase the health insurance premium costs for themselves by making the sick members pay more copays.

So much for group insurance being the answer.  I have been working for the same employer for 37 years and have been paying health insurance premiums all that time with very little claims until lately.  I guess group insurance is great unless you get sick.

[thegrammalady]

i know of 2 companies that give benefits to part time employees. starbucks (20 hours a week) and the gap. both would be good for working and going to school.

[okarol]

I have group insurance through my employer that is administered through BC/BS. Among other drugs I take Cellcept and Prograf.  My Co-Pay at this time is $20 per month for each of these drugs.  However I just learned these drugs have been put on a list of "specialty" drugs which will require a $100.00 a month Copay each beginning in 2008.  They are presently classified as a preferred maintenance drug.

So my out of pocket cost for these two drugs will increase to $2,400 next year from $480 this year.  They are selling this change on the basis that the drugs are an expensive and unnecessary choice like injectable vitamins.  The real reason is they are expensive and the people making the decisions don't take these drugs and thus they are not personally affected by the change.  It allows them to not increase the health insurance premium costs for themselves by making the sick members pay more copays.

So much for group insurance being the answer.  I have been working for the same employer for 37 years and have been paying health insurance premiums all that time with very little claims until lately.  I guess group insurance is great unless you get sick.

I would appeal this change with the insurance company. These drugs definitely are NOT unnecessary! I would also write a letter to your state's insurance commission before this change begins, asking for help.

[paddbear0000]

They are selling this change on the basis that the drugs are an expensive and unnecessary choice like injectable vitamins. 

WTF?! They're comparing life saving drugs to vitamins?!!! Um, I don't see how anyone could consider drugs that keep you alive to be "unnecessary."

[stauffenberg]

Okarol, you may find this a strange suggestion, but I would recommend that your daughter move to Europe and get citizenship in a European country!  When I was in my twenties and lost coverage under my parents' insurance policy, I was suddenly confronted with the fact that, as an American type 1 diabetic, I would never be able to get private healthcare and so would be dogged by healthcare costs I might not be able to manage, whether for drugs or medical treatment, for the rest of my life.  Rather than live in perpetual insecurity, faced forever with the prospect of bankruptcy at the next downturn in my health, regardless of how much money I could earn or save, I moved to Europe where all my healthcare costs were provided free by the government, and where the cost of medications was subsidized by the government.  In England, for example, when I first lived there in 1978, all prescriptions cost just 50 pence or about $1.00, and medications chronically required were free on production to the pharmacist of a special health card confirmng my status.  With globalization forcing all the governments of the world to become more capitalistic and cruel, these benefits are no longer as generous, but I think in England now prescriptions still cost only about 7 pounds each, whatever the actual price of the drug, so only about $14.00.

At university many of my professors were Jews who were driven out of Europe by racial discrimination against them in the 1930s and 1940s.  It just seemed sensible to me to flee medical discrimination in America and go back to Europe.

[keefer51]

Karol, Many people have questioned why i couldn't get any insurance after my ex wife bounced me off of hers. I tried for four years to get the anti rejection drugs i needed for my transplant. I was working at the time but the insurance company wouldn't insure me because i was considered a high risk. I was finally able to go on their insurance coverage after some laws were changed. This was 15 years or so ago. I now have state renal and med. D. I pay around 70$ a month for the D. Sometimes the drug companies can help.

[Zach]

... I was in my twenties and lost coverage under my parents' insurance policy, I was suddenly confronted with the fact that, as an American type 1 diabetic, I would never be able to get private healthcare and so would be dogged by healthcare costs I might not be able to manage, whether for drugs or medical treatment, for the rest of my life.  Rather than live in perpetual insecurity, faced forever with the prospect of bankruptcy at the next downturn in my health, regardless of how much money I could earn or save, I moved to Europe where all my healthcare costs were provided free by the government ...

Maybe you should have stayed, run for U.S. Congress (receiving great health benefits), and contributed to changing the system.
 

[stauffenberg]

If you'll make a campaign documentary for me, I'll come back and run.

[Zach]

If you'll make a campaign documentary for me, I'll come back and run.

Now that would be an interesting campaign!
 

[Jaybird]

I agree with most everyone else and say federal employment is the way to go. I got lucky, I was in the military when I found out at 23, and now I get my meds through the VA at no cost for life. I really feel for other people going through this without coverage. I don't know what I'd do without the VA and my Tricare insurance.

Good luck to you and I hope you find all your answers.
Jaybird

[okarol]

Sixteen months until Medicare expires for Jenna. I am writing to the drug companies. Luckily she is only on Cellcept and Prograf now.
They aren't cheap, but thankfully she doesn't require any other prescription medications since the transplant.

[draven]

Hi Guys

I'm also facing a similar situation. I am on my parents medical aid at the moment as a dependant , which is paying half for the dialysis,
i am hopefully going to have a transplant on November, and again my parents medical aid will pay something towards the meds.
Which is great...  But what happens when my parents pass away. they are in there mid 60's already.

Going on to Disability is a joke here. you get someting like u.s $100 a month. so thats out.

Get a Job. not easy for a white guy living in South Africa. Businesses employ people from previously disadvantaged backrounds.
and our unemployment rate is something like 40%. i was able to get a job before dialysis but that was on contract with No medical at all.

The only real option i think is to Emigrate overseas to the u.k.