My Poor Mom

[cntw8]

Hi all...
I am in desperate need of any info out there to help my mom. She has had psoriasis most of her life. She is now 72 and has tried almost everything available for her treatments. She is finally approved by her derm to start on enbrel. Her happiness of this news was soon clouded over by insurance. She has medicare and two supplimentary insurance companies. Medicare said no, and her other two will only cover partial amounts, so her monthly cost would be over $500.00/mo. Not exactly affordable. If feel so badly for her as her quality of life has diminished terribly. She is 85% covered with redness and scales and is miserable. Why won't medicare step up to the plate when it involves quality of life at her age. When will the costs of these medicines be more affordable for those whom really need it? I have been on enbrel for two years now with no side effects and am 95% totally clear. Fortunately, I have good insurance that pays most of it.
Any suggestions or thoughts on programs that would help my mom with these insurance issues?
Thanks in advance for your suggestions.
cntw8

[SandraJean]

Hi,

I'm so sorry to hear about your Mom's psoriasis! It's such a difficult diease and does affect the quality of life.

I was thinking of a couple of things---one being trying to call Enliven, which is responsabile for helping people try and get Enbrel, when insurance companies might not cover it. If you do a serach for Enliven, you'll find the telephone number to call them.

The other thought I had was to get in contact with Alyssa Brown, right here at the National Psoriasis Foundation.
she helps with advocating for people to help with getting the insurance companies to pay for your prescription and also has alot of great information on how to get coverage for Psoriasis medication.

Sure hope something will work.

Sandy

[RichJ]

hi cntw8,
im sorry to here of your mom's p. i feel for her. im sorry i can't help but hope some thing will help. i hate ins. i wish her the best.

try and have a good day all

richard

[Mybadgenes]

My experiences so far have been.....and I am in your Mother's shoes....no Enbrel for me when the derm prescribed it as the cost was prohibitive. I had Medicare with no prescription coverage. This year I have prescription coverage as anyone with Medicare can purchase. I take MTX because I can afford it. Why won't Medicare step up to the plate.....I have written letters.

I have called Enliven several times over the last couple of years and was denied because I and my husband make just a little too much social security.

Yesterday my new rheumy wanted to start me on Enbrel or Humira and she had Enbrel call me and they asked for my new prescription ID numbers, etc. and said they would get back to me but haven't yet. She also gave me two pamphlets put out by Enbrel...one is Understanding the Medicare Part D benefit...Introducing Enbrel Platinum Partners with a special card to activate and a number to do so. I did not do this as someone called me and is supposed to let me know the cost.

I had qualms about starting Enbrel as to infections, etc. and the rheumy said between the two if you stop Enbrel it only takes 7 days to get out of your system whereas it takes Humira 10. I still have not made up my mind but the cost will be part of the decision.

If and when I hear any more about this I will post. Sorry I was not more definitive. Let's hear from Alyssa ! :)


Juanita

[cntw8]

Thanks for the responses so far...I will have my mother call Enliven on Monday, but I am afraid that they will deny her help because she owns her own home (no mortgage), gets social security and has a rental property that offers alittle extra income. She said she could manage to afford $100-200/mo..but without mortgaging her house, the $500+ per month is just too much. How far does one go to get proper treatment? Do we sell everything we own to get relief? Why are seniors hit so hard with all of this. There comes a point in ones life when you just can't work anymore and rely on soc.sec...and/or other investments. She couldn't go back and get a job with adequate insurance if she wanted too.
Juanita...thankyou for reponding also. I am going to ask her derm. if MTX is suitable for treatment. She has arthritis of the spine and high BP, so she does not qualify for clinical trials (already tried that)
Cntw8

[Jor-EL]

cntw8 -

Did Medicare give a reason why they would not cover enbrel ?

[nesielheum]

Hi all...
I am in desperate need of any info out there to help my mom. She has had psoriasis most of her life. She is now 72 and has tried almost everything available for her treatments. She is finally approved by her derm to start on enbrel. Her happiness of this news was soon clouded over by insurance. She has medicare and two supplimentary insurance companies. Medicare said no, and her other two will only cover partial amounts, so her monthly cost would be over $500.00/mo. Not exactly affordable. If feel so badly for her as her quality of life has diminished terribly. She is 85% covered with redness and scales and is miserable. Why won't medicare step up to the plate when it involves quality of life at her age. When will the costs of these medicines be more affordable for those whom really need it? I have been on enbrel for two years now with no side effects and am 95% totally clear. Fortunately, I have good insurance that pays most of it.
Any suggestions or thoughts on programs that would help my mom with these insurance issues?
Thanks in advance for your suggestions.
cntw8
Hello cntw8,
The NPF provides oodles of information regarding this very subject. Here are a few links that you may find helpful:
Advocating for yourself: Insurance (http://www.psoriasis.org/advocacy/assistance/insurance/index.php)
Insurance advocacy FAQ (http://www.psoriasis.org/advocacy/assistance/insurance/faq.php)
Appealing a denied insurance claim (http://www.psoriasis.org/advocacy/assistance/insurance/appeal.php)
Tips for working effectively with your insurance company (http://www.psoriasis.org/advocacy/assistance/insurance/tips.php)
Sample letter appealing insurance company denial of a claim (http://www.psoriasis.org/advocacy/assistance/insurance/patientletter.php)
Advocacy: Medicare Drug Replacement Demonstration (http://www.psoriasis.org/advocacy/assistance/medicare_demo.php)

These are just a few links, and if you go to the NPFs homepage (http://www.psoriasis.org/home/) and type in a term "insurance" "medicare" "medicade" etc... in the search box you will given a comprehensive list of links to all sorts of additional pertinent information. The NPF provides a great service to us all by providing massive amounts of useful information for virtually all Psoriasis related issues. I encourage everyone to take full advantage of the accurate and professional information that the NPF provides on there website, and take everything that is posted by us mere amateurs on the Message Boards with a grain of salt.

[MikeK]

Hi Cntw8,

I'm sorry to hear that your mother is going through such a rough time.

In addition to Eliven Services, you also may want to check out one of the assistance programs that have been discussed her on the board. We don't know very much about most of them, but I can tell you that at least two people who sometimes post here got assitance for Enbrel (and Remicade) thanks to a program called www.needymeds.com. Miranda (LadyFraser) was able to get assistance from www.needymeds.com while her husband was transitioning from being self employed (with no insurance) to working for the government (with excellent benefits). Links to her story can be found here: http://www.psoriasis.org/forum/showthread.php?t=3979 and in a thread that was started by Leslie (Momtotwogirls). (Leslie took the time to post the links and information about some of assistance programs that she came across. I added the links and information about other programs that people have either told me about or that have been discussed here on the Board. With the exception of www.needymeds.com, we don't know very much about most of these programs, but it can't hurt to check them out.) Here's a link to Leslie's thread: http://www.psoriasis.org/forum/showthread.php?t=12379.

One of the programs that Leslie and I both discuss is a program called Patient Services Incorporated or PSI. According to their website, PSIis a non-profit organization primarily dedicated to providing health insurance premium assistance, pharmacy co-payment assistance and co-payment waiver assistance for persons with specific expensive chronic illnesses.Source: http://www.uneedpsi.org/about.cfm.

There's good news and bad news about PSI. The good news is that their website states that families affected by certain specific illnesses (including psoriasis):are eligible to apply, regardless of income.Source: http://www.uneedpsi.org/eligibility.cfm.

The bad news is that their website also states that funding for:Plaque Psoriasis - CLOSED DUE TO INSUFFICIENT FUNDINGSource: http://www.uneedpsi.org/eligibility.cfm.

Tani (tmartha) posted that PSI exhaused their budget for psoriasis when she called to inquire several months ago. :( (Here's a link to her post: http://www.psoriasis.org/forum/showthread.php?p=217928#post217928.) It still can't hurt to check them out.

Finally, Alyssa Brown from the NPF's staff posted some very userful information about assistance programs in this thread: http://www.psoriasis.org/forum/showthread.php?p=236040#post236040.

I hope this helps.

Good luck! Keep us posted!

Mike

[cntw8]

Mike
Thanks so much for all the info. I will plow through all of this with her tonight and hopefully she can get some assistance.
Cntw8

[Alesis]

Thank you from me, too.

A.

[Kimbercat]

I'd like to make one other suggestion if you find that you can't get around the roadblocks to Enbrel. From my understanding, Medicare will cover Remicade because it's an infusion, and therefore falls into a different classification (I believe it's major medical). If your mom's docs think this might be a good alternative for her, it may be worth looking into. Good luck, and I hope you can help your mom find some relief.

[cntw8]

I knew I came to the right place. I never thought of Remicade being covered by Medicare....now how silly...they will cover that and not Enbrel :-(
At least there is another option for her.
Thanks everyone!!!

[Mybadgenes]

My experiences so far have been.....and I am in your Mother's shoes....no Enbrel for me when the derm prescribed it as the cost was prohibitive. I had Medicare with no prescription coverage. This year I have prescription coverage as anyone with Medicare can purchase. I take MTX because I can afford it. Why won't Medicare step up to the plate.....I have written letters.

I have called Enliven several times over the last couple of years and was denied because I and my husband make just a little too much social security.

Yesterday my new rheumy wanted to start me on Enbrel or Humira and she had Enbrel call me and they asked for my new prescription ID numbers, etc. and said they would get back to me but haven't yet. She also gave me two pamphlets put out by Enbrel...one is Understanding the Medicare Part D benefit...Introducing Enbrel Platinum Partners with a special card to activate and a number to do so. I did not do this as someone called me and is supposed to let me know the cost.

I had qualms about starting Enbrel as to infections, etc. and the rheumy said between the two if you stop Enbrel it only takes 7 days to get out of your system whereas it takes Humira 10. I still have not made up my mind but the cost will be part of the decision.

If and when I hear any more about this I will post. Sorry I was not more definitive. Let's hear from Alyssa ! :)


Juanita

In addition....My new rheumatologist's office just called and said with my prescription for two shots a week (if I decide to take it) will be $300 to 400 a month which is considerably less than before my newly added Medicare Part D coverage. Now mind you this is with my rheumy for PsA. I have not checked with my derm since I have had this new insurance. I am not sure I want to pay this amount. The office is going to call again to check on further application for aid. I will let you know about that when I hear. I also don't know if it would go up when I hit the "doughnut hole" where you have to pay full amounts until a certain amount. I will check on that also.

Juanita

[kelley]

My mother is now 75 and has psoriasis. She's had it since she was 50. Recently, however, she was diagnosed with psoriatic arthritis. She's been having problems with joint pain and inflammation.

Does your mom exhibit any symptoms of joint pain, stiffness in her joints, tendonitis or soft tissue swelling? I can tell you that the one biologic drug (like Enbrel) that Medicare B will cover is Remicade. It is approved for the treatment of psoriatic arthritis, but, as far as I know, not for the treatment of psoriasis. If your mother actually had psoriatic arthritis, she could perhaps arrange for treatment with Remicade which will also work wonders with the psoriasis.

I've been telling my mother for the past 5 years to see a rheumatologist and thought she had PA, just like myself. Her pain and stiffness got so bad that she finally went to a rheumy. Now she knows that she has psoriasis and psoriatic arthritis. She has Medicare A and B and supplmental health insurance. The Medicare alone will cover the Remicade for psoriatic arthritis because it's given by IV infusion in a doctor's office.

If you thought there were any chance that your mom has psoriatic arthritis, she might be able to get the relief she's looking for with the Remicade. About 10 to 20 percent of people with psoriasis end up with some form of psoriatic arthritis.

This may be a shot in the dark, but I thought I'd throw it out there...it's great that you're there for your mom like this.

Regards,

Mark

[Mybadgenes]

I just received this letter to me...a plan member of Medicare Part D with AARP....stating.....We have denied coverage of the following prescription drug that you or your physician requested. ENBREL 50 MG/ML SYRINGE.
We denied this request because Your prescription benefit allows for a maximum quantity. Quantities exceeding this limit require authorization. The request for quantities above the limit has been denied. Your plan's current limit is 4 syringes for 28 days.

If I don't agree with this decision I have the right to appeal. I just wanted to add this bit of info to the discussion and have to digest this.

Juanita

[wildflowerAnn]

Is that 4 syringes per month, or 4 syringes and no more ever again? For a policy to state that it covers an injectable, and then to put limits on it like that is a bit like selling hurricane insurance (and putting in fine print that only wind and no water damage is covered). Wonder what the state insurance commissioner would think about that?