How to pay for life-long immunosuppressants

[G-Ma]

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.

[okarol]

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.

[okarol]

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??

 

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.

[xtrememoosetrax]

(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.

[willieandwinnie]

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. 

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

[lola]

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.

[Sunny]

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.

[okarol]

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.

[willieandwinnie]

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  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. 

[G-Ma]

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

[BigSky]

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.

[okarol]

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.

[willieandwinnie]

okarol, she should receive SSI as long as she has medicare. 

[BigSky]

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.

[okarol]

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

[kitkatz]

I would go with the work related impairment expenses. No transplant meds, no workie.

[BigSky]

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.

[okarol]

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.
 

[vandie]

Big sigh of relief.   Good job, Ed!!

[monrein]

What a huge relief that must be and at Christmas time too.  Perfect.

[Sunny]

What a relief for you and your family. It's good to know Jenna will be covered by your insurance for good (hopefully).

[willieandwinnie]

okarol, I was so happy to read this. Make sure Ed stays on top of it and Jenna should be fine. 

[Chris]

That's good news there okarol.

[okarol]

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  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. 

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! 

[pelagia]

This is great news!   

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.