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Dialysis Discussion => Dialysis: Transplant Discussion => Topic started by: okarol on August 10, 2007, 09:16:28 AM

Title: How to pay for life-long immunosuppressants
Post by: okarol on August 10, 2007, 09:16:28 AM
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!
Title: Re: How to pay for life-long immunosuppressants
Post by: MyssAnne on August 10, 2007, 09:37:23 AM
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?
Title: Re: How to pay for life-long immunosuppressants
Post by: KT0930 on August 10, 2007, 10:04:42 AM
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.
Title: Re: How to pay for life-long immunosuppressants
Post by: BigSky on August 10, 2007, 02:13:50 PM
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
Title: Re: How to pay for life-long immunosuppressants
Post by: highlite36 on August 11, 2007, 06:34:01 PM
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.   
Title: Re: How to pay for life-long immunosuppressants
Post by: Black on August 11, 2007, 06:49:45 PM
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! :twocents;
Title: Re: How to pay for life-long immunosuppressants
Post by: Wattle on August 11, 2007, 11:41:27 PM

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?

 :ausflag; Our system is a little different. We are still out of pocket around $30 per script. Unless you are a low income earner.
Title: Re: How to pay for life-long immunosuppressants
Post by: Romona on August 12, 2007, 06:47:27 AM
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.
Title: Re: How to pay for life-long immunosuppressants
Post by: highlite36 on August 12, 2007, 07:08:04 AM


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.......
Title: Re: How to pay for life-long immunosuppressants
Post by: Rerun on August 12, 2007, 08:02:59 AM
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/
Title: Re: How to pay for life-long immunosuppressants
Post by: st789 on August 13, 2007, 04:55:58 PM
So much info.... Thank you everyone.
Title: Re: How to pay for life-long immunosuppressants
Post by: angela515 on August 13, 2007, 08:47:57 PM
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.
Title: Re: How to pay for life-long immunosuppressants
Post by: st789 on August 17, 2007, 09:53:44 AM
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.
Title: Re: How to pay for life-long immunosuppressants
Post by: ahamner on September 11, 2007, 09:10:59 AM
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.
Title: Re: How to pay for life-long immunosuppressants
Post by: thegrammalady on September 11, 2007, 09:32:30 AM
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.
Title: Re: How to pay for life-long immunosuppressants
Post by: okarol on September 11, 2007, 09:36:13 AM
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.
Title: Re: How to pay for life-long immunosuppressants
Post by: paddbear0000 on September 11, 2007, 10:50:28 AM
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."
Title: Re: How to pay for life-long immunosuppressants
Post by: stauffenberg on September 30, 2007, 06:29:27 PM
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.
Title: Re: How to pay for life-long immunosuppressants
Post by: keefer51 on October 01, 2007, 02:19:24 AM
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.
Title: Re: How to pay for life-long immunosuppressants
Post by: Zach on October 01, 2007, 04:47:37 AM
... 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.
 8)
Title: Re: How to pay for life-long immunosuppressants
Post by: stauffenberg on October 01, 2007, 02:31:35 PM
If you'll make a campaign documentary for me, I'll come back and run.
Title: Re: How to pay for life-long immunosuppressants
Post by: Zach on October 01, 2007, 08:14:21 PM
If you'll make a campaign documentary for me, I'll come back and run.

Now that would be an interesting campaign!
 :beer1;
Title: Re: How to pay for life-long immunosuppressants
Post by: Jaybird on November 23, 2007, 02:41:47 PM
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
Title: Re: How to pay for life-long immunosuppressants
Post by: okarol on September 06, 2008, 11:51:41 AM


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.
Title: Re: How to pay for life-long immunosuppressants
Post by: draven on September 07, 2008, 12:44:08 AM
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.


Title: Re: How to pay for life-long immunosuppressants
Post by: G-Ma on September 07, 2008, 01:56:44 AM
The nephrologist told me the American Kidney Fund will help in cases where you have a transplant and cannot afford the medication you need...would be worth checking.
Title: Re: How to pay for life-long immunosuppressants
Post by: okarol on September 09, 2008, 12:09:48 PM
I found this here: http://www.medicare.gov/MPPF/Include/DataSection/Questions/ESRDinfo.asp


If you have End-Stage Renal Disease, you usually can’t join a Medicare Health Plan (like an HMO or PPO). There are exceptions:

    * If you are already in a plan, you can stay in that plan or join another plan offered by the same company.
    * If you are already in a plan and the plan leaves Medicare or no longer provides coverage in your area, you have a one-time right to join another plan.
    * If you have had a successful kidney transplant, you may be able to join a plan.
    * If you live in an area where there is a Medicare Special Needs plan for people with ESRD, you can join that plan.

Call 1-800-MEDICARE (1-800-633-4227) for more information.

I need to call and find out more.
Title: Re: How to pay for life-long immunosuppressants
Post by: okarol on October 28, 2008, 12:06:14 PM
In addition to Medicare (which expires Jan 2010), Jenna has been covered by our Blue Shield family plan (it's a cobra - extension because my husband became disabled) but we were just notified that on Jenna's 23 birthday she will no longer be considered a college age student and will have to transition to her own plan (at a cost of about $360 per month.) Her birthday is Nov. 21.

I think because she became disabled while under our family plant, we can insist that she stay on (we pay $1,200 for the family plan as it is!) and continue until her Medicare ends (at 36 months she is no longer eligible so I guess she's no longer disabled?)

We don't know what to do. The options are:

1. Insist that Blue Shield keep her on our plan as a disabled dependent until Jan. 2010, then transition her to her own policy (if it's even offered then, not sure if Blue Shield is required to give her a plan without a rider due to pre-existing condition.) - IMPACT: Eligibility unknown. Save $360 a month, but future unknown.

2. Take the offer of the new policy and get a high deductible to possible bring down the cost a bit. IMPACT: Large monthly cost for her, but hopefully the policy will continue as long as she can pay for it.

3. Take option #1, but find a plan that Medicare will transition her to. (She presently has a  AARP plan through Medicare.) IMPACT: Cost unknown. Eligibility unknown.

4. Let the Blue Shield option lapse and plan on transitioning to a Medicare plan at termination of her coverage at 36 months post-transplant. IMPACT: Who the heck knows??

 :banghead;

Oh and another thing that I wanted to mention. It's one thing to pay for the meds (they run about $1000 per month) but the other is to be sure she has coverage for bi-annual transplant appointments, monthly lab tests and insurance if she becomes sick and needs hospitalization, or needs parathyroid surgery, or anything else that kidney patients experience.

Any guidance is greatly appreciated.
Title: Re: How to pay for life-long immunosuppressants
Post by: xtrememoosetrax on October 28, 2008, 12:26:16 PM
(if it's even offered then, not sure if Blue Shield is required to give her a plan without a rider due to pre-existing condition.)
It's always been my impression that one of the provisions of HIPAA is that as long as your health insurance never lapses entirely for more than 30 days (? maybe 60??), pre-existing conditions are not an issue.  This would mean that they can't slap you with a pre-existing condition rider when changing insurance coverage, as long as you never let your coverage lapse outright.  Obviously, you should check on this, because I may be wrong, but I hope this helps.
Title: Re: How to pay for life-long immunosuppressants
Post by: willieandwinnie on October 28, 2008, 12:31:14 PM
okaro, I did a long post and it got lost. I have some bookmarks on this issues because we had a horrible time a couple of years ago. As I find them, I'll post. I hope this gets worked out fast.  :cuddle;

http://www.nahu.org/

http://www.healthinsurance.org/california

http://www.icanbenefit.com/?gclid=CLDD7-DWypYCFQRhswodIFSOzA

http://approvedhealthinsurance.com/

https://www.greathealthplan.net/default.asp?ap=Google&ag=LowCostHealthInsurance&k=health%20insurance&mb=2.3&gclid=CKWu4drXypYCFQXGsgodjX8oxw

http://www.transplantexperience.com/kidney_support_financial_resources.php

Title: Re: How to pay for life-long immunosuppressants
Post by: lola on October 28, 2008, 12:37:26 PM
I thought that as long as you have Cobra or other forms of INS they can't hold pre-existing conditions against you. Karol have you called anyone at the National Kidney Foundation I know several people who have said they REALLY helped them out.
Title: Re: How to pay for life-long immunosuppressants
Post by: Sunny on October 28, 2008, 12:43:04 PM
What a terrible dilemma for your family.
This is why we need some form of National Health care in the U.S.
Keep us posted on your efforts so we can all learn from this.
Title: Re: How to pay for life-long immunosuppressants
Post by: okarol on November 19, 2008, 01:17:10 PM
Thanks Xtreme, WAW and lola for the help.

We have received a form from our health insurance carrier. In order to keep Jenna on our family policy (she turns 23 on 11/21, so they will remove her as a college student) we need to show that she is still disabled. Since having a kidney transplant, she has no other health problems besides a neurogenic bladder. But she is covered by Medicare until 36 months post-op (Jan 2010) and we are hoping that Blue Shield will keep her on our policy as well, until then, at which time we can hopefully transition her to a new policy of her own. Keeping her on our policy will save us $400 per month. We do not want to let any coverage lapse for fear she would not be eligible for a new policy. My husband actually thinks we should try to keep her on our policy indefinitely.

Here's my question. The form asks the physician to certify that the patient is "incapable of self-sustaining employment because of ___________ (diagnosis of disabled over age dependent child). Prognosis __________ .  Estimated date of ability for self-sustaining employment _________."

I am not sure whether her Gp or neph would be the one to answer the questions - or perhaps the transplant team?
Is she considered to still have ESRD even though she has a transplant? She's worked part time but I wouldn't call it "self-sustaining."

Thanks for any guidance.
Title: Re: How to pay for life-long immunosuppressants
Post by: willieandwinnie on November 19, 2008, 01:38:06 PM
okarol, being the bitch that I am, I'd have all of them fill out a form. What you need to remember and gently remind  :Kit n Stik; doctors is a transplant is another form of treatment. I fought long and hard over that battle. VA tried to say Len wasn't 100% disabled anymore and I got all doctors involved to write that, that is not so because a transplant brings on another set of problems. Fight for it okarol and if I can be of any help just ask.  :cuddle;
Title: Re: How to pay for life-long immunosuppressants
Post by: G-Ma on November 19, 2008, 01:43:01 PM
yes okarol, w w is exactly right...make copies of every form and have everyone under the sun complete and fax or mail them.  Good luck.
Ann
Title: Re: How to pay for life-long immunosuppressants
Post by: BigSky on November 19, 2008, 02:01:10 PM
In addition to Medicare (which expires Jan 2010), Jenna has been covered by our Blue Shield family plan (it's a cobra - extension because my husband became disabled) but we were just notified that on Jenna's 23 birthday she will no longer be considered a college age student and will have to transition to her own plan (at a cost of about $360 per month.) Her birthday is Nov. 21.

Not sure what she got but due to her young age it would seem she got SSI before the transplant.

If so she might be able to medicaid to pay for the medication and or pay for insurance.  Those who are on SSI get free medicaid.  If they have a tx they can continue to get free medicaid to pay for the tx drugs if they are unable to afford them and they need those things for them to be able to work.

Its called something like a 1619 b program.
Title: Re: How to pay for life-long immunosuppressants
Post by: okarol on November 19, 2008, 02:26:49 PM

I will check into it. She got Supplemental SSI through my earnings when she began dialysis at 18 (she had never worked.) I am pretty sure the SSI will end, we just don't know when.
Title: Re: How to pay for life-long immunosuppressants
Post by: willieandwinnie on November 19, 2008, 03:05:57 PM
okarol, she should receive SSI as long as she has medicare.  :waving;
Title: Re: How to pay for life-long immunosuppressants
Post by: BigSky on November 19, 2008, 04:51:28 PM

I will check into it. She got Supplemental SSI through my earnings when she began dialysis at 18 (she had never worked.) I am pretty sure the SSI will end, we just don't know when.

Even if SSI ends or she does not collect a check because of excess wages one can still get medicaid free because the stipulation to the 1619b program is that the person who is on or was getting SSI needs medicaid in order to keep working, etc etc.

Title: Re: How to pay for life-long immunosuppressants
Post by: okarol on November 19, 2008, 04:59:30 PM
Thanks BigSky. But will she still be considered "disabled" since she had the transplant?

I found this:

Continued Medicaid Eligibility (Section 1619(B))

One of the biggest concerns SSI beneficiaries have about going to work is the possibility of losing Medicaid coverage. Section 1619(b) of the Social Security Act provides some protection for these beneficiaries. To qualify for continuing Medicaid coverage, a person must:

    * Have been eligible for an SSI cash payment for at least 1 month;
    * Still meet the disability requirement; and
    * Still meet all other non-disability SSI requirements; and
    * Need Medicaid benefits to continue to work; and
    * Have gross earnings that are insufficient to replace SSI, Medicaid and publicly funded attendant care services.

This means that SSI beneficiaries who have earnings too high for a SSI cash payment may be eligible for Medicaid if they meet the above requirements. SSA uses a threshold amount to measure whether a person’s earnings are high enough to replace his/her SSI and Medicaid benefits. This threshold is based on the:

    * amount of earnings which would cause SSI cash payments to stop in the person’s State; and
    * average Medicaid expenses in that State.

If a SSI beneficiary has gross earnings higher than the threshold amount for his/her State, SSA can figure an individual threshold amount if that person has:

    * Impairment-related work expenses; or
    * Blind work expenses; or
    * A plan to achieve self-support; or
    * Personal attendant whose fees are publicly funded; or
    * Medical expenses above the average State amount.

More info here: http://www.ssa.gov/disabilityresearch/wi/1619b.htm
Title: Re: How to pay for life-long immunosuppressants
Post by: kitkatz on November 19, 2008, 05:03:43 PM
I would go with the work related impairment expenses. No transplant meds, no workie.
Title: Re: How to pay for life-long immunosuppressants
Post by: BigSky on November 19, 2008, 05:27:21 PM
She should as by the Impairment-related work expenses.  Also  in some cases medicaid will even pay for insurance premiums if its benefits them (medicaid) more to pay for the insurance than it does for them to cover the person though the medicaid program.


One person I know had a tx and even though was no longer getting a SSI check they continued to get free medicaid because SS said they could not afford to pay for the drugs which they needed in order to work.
Another guy is on dialysi sand gets  SSI and works and is able to make as much as he wants and still get free medicaid. Usually in this state any income over 650 a month roughly and you have to pay for medicaid.


The way the 1619 waiver should apply the same in all states but it could differ since each state runs medicaid a bit differently.
Title: Re: How to pay for life-long immunosuppressants
Post by: okarol on December 24, 2008, 10:54:53 AM

As I mentioned before, Blue Shield notified us that Jenna would be removed from our policy on her 23 birthday (Nov. 21) as she was no longer considered to be a college age student. My husband called the HR dept. of his previous employer (he has our cobra extension policy as he is also disabled) and told them Jenna should not be removed as she became disabled when a dependent on our policy. He told them that since ESRD is not curable, that she would need to be covered and remain on our policy. Miracle of miracles, Blue Shield agreed! So until they find a loophole, she will remain on our policy as disabled.
 :2thumbsup;
Title: Re: How to pay for life-long immunosuppressants
Post by: vandie on December 24, 2008, 11:15:26 AM
Big sigh of relief.   Good job, Ed!!
Title: Re: How to pay for life-long immunosuppressants
Post by: monrein on December 24, 2008, 12:43:45 PM
What a huge relief that must be and at Christmas time too.  Perfect.
Title: Re: How to pay for life-long immunosuppressants
Post by: Sunny on December 24, 2008, 12:47:35 PM
What a relief for you and your family. It's good to know Jenna will be covered by your insurance for good (hopefully).
Title: Re: How to pay for life-long immunosuppressants
Post by: willieandwinnie on December 24, 2008, 01:38:09 PM
:yahoo; okarol, I was so happy to read this. Make sure Ed stays on top of it and Jenna should be fine.  :cuddle;
Title: Re: How to pay for life-long immunosuppressants
Post by: Chris on December 24, 2008, 02:48:46 PM
That's good news there okarol. :clap; :bandance;
Title: Re: How to pay for life-long immunosuppressants
Post by: okarol on December 24, 2008, 03:26:37 PM
okarol, being the bitch that I am, I'd have all of them fill out a form. What you need to remember and gently remind  :Kit n Stik; doctors is a transplant is another form of treatment. I fought long and hard over that battle. VA tried to say Len wasn't 100% disabled anymore and I got all doctors involved to write that, that is not so because a transplant brings on another set of problems. Fight for it okarol and if I can be of any help just ask.  :cuddle;

It was this post that encouraged us to pursue the tact that she is not cured of ESRD. (Thanks WAW)
Both her PC and Neph signed the insurance form stating what the insurance required. Their criteria was that she is "unable to obtain self-sustaining employment" due to her disability, which for now her doctors feel would be hard to do.
Thank you everyone, for the suggestions and guidance! You guys ROCK!  :2thumbsup;
Title: Re: How to pay for life-long immunosuppressants
Post by: pelagia on December 24, 2008, 06:25:31 PM
This is great news!   :cuddle;

I do remember that the first session we went to at the transplant clinic the clinic director said "Never forget that a transplant is a treatment, not a cure."  It was like cold water in the face for me. 

Really though none of this would be an issue if we had a better health care system.  Personally I'd be happy with what they're getting in Canada.
Title: Re: How to pay for life-long immunosuppressants
Post by: monrein on December 25, 2008, 02:42:31 PM
Pretty much every day I'm grateful for our medical system Pelagia.  I think of it and my donors almost every day and thank my lucky stars.
Title: Re: How to pay for life-long immunosuppressants
Post by: okarol on March 03, 2011, 11:02:29 PM

I worry about other young people who lose coverage at 3 years post-transplant. It's an issue that still has not been resolved.
We have coverage still, but others are not so lucky. Hopefully having pre-existing conditions removed with the healthcare bill will allow people to purchase policies (for a reasonable amount.)
Title: Re: How to pay for life-long immunosuppressants
Post by: rsudock on March 05, 2011, 09:40:02 AM
I know I said it before on other post but I will say it again! Jenna is so lucky to have parents that are so involved in her healthcare!! Fighting for her and helping her. When I was graduating from college worried sick about how I was going to afford to pay for my health insurance my mother couldn't even give two rips that I was really in a tight bind. It wasn't her job to help me! Thank goodness everyday for caregivers who do care and sacrifice their own time to help their loves ones!! Thankfully I have a boyfriend who has stepped in to help me....

Great advice on here!!

xo,
R
Title: Re: How to pay for life-long immunosuppressants
Post by: okarol on July 24, 2011, 03:00:24 PM

Supposedly anyone who gets a transplant now would be ok 3 years from now as the healthcare bill prohibits insurance companies from excluding patients due to a pre-existing condition. But no one says how much the health insurance will be, or what will happen if you cannot find employment or can't afford the premiums.
Title: Re: How to pay for life-long immunosuppressants
Post by: The Noob on July 24, 2011, 05:38:49 PM
we wonder about this too. hubby was terminated from his employer of 26 yrs after 12 months of medical leave. he has medicare and NKF is paying the cobra, i think there was issue about it being 1 yr or 29 months?
so he gets a transplant soon, which is looking very likely, then what? he has a family member who's offered to get him a state job if we move there (which we would love to do). he'd never find work here, very depressed area.
what would you do?
Title: Re: How to pay for life-long immunosuppressants
Post by: MooseMom on July 24, 2011, 06:37:42 PM
What has the social worker at the transplant center had to say?  They won't list/transplant anyone unless they are satisfied that the patient's post-tx drugs can be paid for.
Title: Re: How to pay for life-long immunosuppressants
Post by: okarol on October 25, 2011, 09:21:03 PM
What has the social worker at the transplant center had to say?  They won't list/transplant anyone unless they are satisfied that the patient's post-tx drugs can be paid for.

Yes, if you cannot show a long term plan they can deny your being wait listed.