MPN Voice
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Susan 3025

Wondering why in this country that if you work you get less? My grandson had a job and was on his way to marriage and a new home when he became ill with AML Leukemia. He of course lost all of it.. except his new wife. He lived with his parents my daughter and her husband his dad until recently. They have nothing although his new wife is working to jobs. He was on Medicaid and recently got Medicare.. Now he was denied the medication Jakafi which he needs after he got Medicare. What does this say about our system? He had excellent insurance when he was working. But since he became ill he cant work and lost his job and insurance. I am ashamed to say I work in the healthcare industry. What has it come too? If you are poor you are crap out of luck..I need help in getting his medication paid for.. I have been a nurse for 30 years working in UR, for the government and hospital. I knew this was getting bad for patients. I have also worked in ICU, CCU and other areas of the healthcare field. My daughter is a doctor so we are in the medical field. But it makes no difference in this society. Apparently being in the working class does not help you. Only if you are dirt poor you can get help.. Can anyone give me some advice on how to get his meds covered..He is not doing so well.. Susan RN

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Hello Susan, I sympathise totally with you. What an awful situation your family is in. I read your post and went looking on the internet to see if I could find anything. (I'm in the UK, so our situation here is totally different). I found this and wondered if it might be of any help. It's an article about Healthwell which has recently decided it would offer help to AML sufferers. healthwellfoundation.org/st... It's the only help I can offer. I sincerely hope you manage to find something. Liz x

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Hi Susan,

I'm so sorry to hear of your grandsons plight and how as a family you're understandably affected by this. At times like this life seems so unfair. It is outrageous that at this already stressful time you have to battle this issue too.

I've noted lizk1993 has posted a link to a very interesting article. I wonder also if you might consider something like, 'Go Fund Me' to raise money. I'm sure people would give generously to such a worthwhile cause.

My thoughts are with you and your family

Mary x

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Hi Susan, very sorry to hear of your family’s situation. Have you considered having your Grandson sign up for a Medicare Advantage Plan? Traditional Medicare does not really have drug coverage, but an Advantage Plan will and the premium would certainly be less than the out of pocket medication cost.

Also, if a close relative served in the military your Grandson may be eligible for a supplemental insurance plan for direct descendent of military veterans.

As was suggested, you also could make a compassion case to the drug manufacturer. Many offer steep discounts to accommodate patients in financial need.

I’m not sure which State you are in, but some such as New York have goverment assistance funds that can be applied for.

I do hope this can be worked out. Being an American I do understand your frustration.

Best

Christina

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Susan, I forgot to suggest that as a nurse in the hospital system that you speak with the finance department as well as your hospital social worker. They should be well versed in these situations and may have viable suggestions and can walk you through the system.

Christina

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Dear Susan, I sincerely hope you can get this sorted. If you are in the US there is a forum for MPN and information on all aspects of funding comes up regularly. I have copied all the info below. If you can access the FAQ it might help. But you can join and post your query too.

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