Hello. My mother was diagnosed recently with myeloma. She is poor. She worked as a store cashier before she was sick. She did not have insurance.
She has applied for Medicaid but the process is taking so long!! Velcade and Revlimid have been donated, but the oncologist wants $100 for each visit (2 visits week), and she has to pay for weekly blood work. I understand that her dr needs oayment, i don't have an issue with that. But he isnt willing to let the fees accrue until medicaid begins.
She is out of money, i'm helping as much as I can, but how can we get Medicaid to step it up??! Her LIFE depends on it! (We are in FL, and Medicaid knows her situatiion. She's also in renal failure due to the myeloma. This is just so sad and scary).
My apologies for any typos..
Have a blessed day.
Tina
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MrsFisher - Name: Tina
- Who do you know with myeloma?: Mother
- When were you/they diagnosed?: Oct 2013
- Age at diagnosis: 61
Re: Frustrated! Any advice about Medicaid?
Does your mother qualify for Medicare since she is in renal failure? Is your mother being seen by an multiple myeloma specialist at a cancer center? If not, I would recommend that. Have you applied for financial assistance through the Lymphoma and Leukemia Society? They have funds up to $10,000 annually to help with medical expenses. It is based on annual income and your mother would probably qualify. Also contact the Chronic Disease Fund. They also give up to $10,000 annually for help with paying for Revlimid. You should also talk with Celgene, manufacturer of Revlimid, about there financial assistance program for paying for Revlimid.
There are a number of other programs that assist with all manner of needs of people who are being treated for cancer. Contact the local chapter of the American Cancer Society, the International Myeloma Foundation and the Multiple Myeloma Research Foundation.
I know that this is a lot of work, but it may pay off in helping your mother until she is approved for Medicaid. But, really see if your mother would qualify for Medicare. If she is diagnosed with end stage renal failure, this is an automatic qualifier for immediate Medicare coverage.
Good luck and I hope that you and your mother find the financial, and other, assistance that she needs to move through her treatments successfully.
Nancy in Phila
There are a number of other programs that assist with all manner of needs of people who are being treated for cancer. Contact the local chapter of the American Cancer Society, the International Myeloma Foundation and the Multiple Myeloma Research Foundation.
I know that this is a lot of work, but it may pay off in helping your mother until she is approved for Medicaid. But, really see if your mother would qualify for Medicare. If she is diagnosed with end stage renal failure, this is an automatic qualifier for immediate Medicare coverage.
Good luck and I hope that you and your mother find the financial, and other, assistance that she needs to move through her treatments successfully.
Nancy in Phila
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NStewart - Name: Nancy Stewart
- Who do you know with myeloma?: self
- When were you/they diagnosed?: 3/08
- Age at diagnosis: 60
Re: Frustrated! Any advice about Medicaid?
Has she applied for disability, or is she on disability? If so she should get Medicaid with the disability. If not she needs to sign up for disability. I have had Multiple Myeloma since 2007. I filed for disability in 2009 after I was laid off from my job, I rec'd my disability in 3 months with Medicaid. I know some who it has taken longer to get their disability but she needs to file if she hasn't. I live in Ohio, not sure if it works different in other states. Best wishes to you and your mom. Nancy
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nancy524 - Name: Nancy Schwartz
- Who do you know with myeloma?: me
- When were you/they diagnosed?: diagnosed Dec. 2007
- Age at diagnosis: 53
Re: Frustrated! Any advice about Medicaid?
Good morning
Thank you for taking the time to reply. She is in renal failure and I know she qualifies for Medicare based on that. But her myeloma is aggressive -- 80% involvement (is that the right word?), and she has the bad genetic trait found in FISH tests. She cannot wait 2 months for treatment.
I will look into the LLS info. Thanks again, all.
Thank you for taking the time to reply. She is in renal failure and I know she qualifies for Medicare based on that. But her myeloma is aggressive -- 80% involvement (is that the right word?), and she has the bad genetic trait found in FISH tests. She cannot wait 2 months for treatment.
I will look into the LLS info. Thanks again, all.
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MrsFisher - Name: Tina
- Who do you know with myeloma?: Mother
- When were you/they diagnosed?: Oct 2013
- Age at diagnosis: 61
Re: Frustrated! Any advice about Medicaid?
We are finding it very challenging to have multiple myeloma and be on Medicaid. What a nightmare.
Having to get a PCP referral for everything is one thing, but trying to get a transplant scheduled with the local cancer center is very frustrating. We had an appointment scheduled for next week, but when they discovered my husband did not need another round of treatment (other than the large dose right before the transplant), they reneged and said they "will call back" (they have not).
Also, trying to get into the cancer center's pain management clinic is another problem. They cannot find the referral(s) faxed to them by his PCP. He has been in pain management for 13 years (he has probably had multiple myeloma for years, but was diagnosed February 2016 when RBC count was so low he was almost comatose and had immediate transfusion), but we had "regular" insurance until my husband finally got SSID and had to go on Medicaid. His old pain doctor does not accept Medicaid. We cannot afford private insurance as he will not get a tax credit and the monthly premium exceeds our income.
His oncologist seems indifferent, always asking my husband, "Well, what do you want to do now?" Are we with the wrong doctors, or is this sort of thing common for patients on Medicaid?
Having to get a PCP referral for everything is one thing, but trying to get a transplant scheduled with the local cancer center is very frustrating. We had an appointment scheduled for next week, but when they discovered my husband did not need another round of treatment (other than the large dose right before the transplant), they reneged and said they "will call back" (they have not).
Also, trying to get into the cancer center's pain management clinic is another problem. They cannot find the referral(s) faxed to them by his PCP. He has been in pain management for 13 years (he has probably had multiple myeloma for years, but was diagnosed February 2016 when RBC count was so low he was almost comatose and had immediate transfusion), but we had "regular" insurance until my husband finally got SSID and had to go on Medicaid. His old pain doctor does not accept Medicaid. We cannot afford private insurance as he will not get a tax credit and the monthly premium exceeds our income.
His oncologist seems indifferent, always asking my husband, "Well, what do you want to do now?" Are we with the wrong doctors, or is this sort of thing common for patients on Medicaid?
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jdelves - Name: Judy
- Who do you know with myeloma?: husband
- When were you/they diagnosed?: Feb 2016
- Age at diagnosis: 58
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