LOSING HEALTH INSURANCE 😐

[Redbone55]

Hello everyone! I will be losing my health insurance this year in December and I was reaching out to you guys to find out if you know of any assistance programs/programs that help with insurance premiums and medications? I have been doing my own research as well, but there could be some agencies out there that I don’t know about. Thank you for any advice or input😊

[Alfredmynewkidney]

Have you talked to your transplant team? Do you qualify for Medicare? Can you get a job with insurance? I have insurance through work so haven't needed to do any research. Have you contacted the kidney foundation? Or groups such as that? I know my transplant coordinator has been great with helping me answer questions.

[Lifechanger1]

Try the social worker at the hospital you had your transplant. My social worker introduced me to programs that help me with just about all my expenses associated with my dialysis, transplant and prescriptions. I also have been and currently on Medicare. Wishing you the best.

[Redbone55 in reply to Lifechanger1]

Thanks for your response however I am currently coming up to my end of my cobra insurance through my job I also have medicare, but the prescription half on my Medicare advantage plan is pretty high. I have been in contact with my transplant social worker how ever she seems to not have much information I think I have more information than she does. She is not very forthcoming with any thing. I think that I am going to request for another social worker if possible. I do plan on going to look for a job the first of next year I just wanted to give myself some time after my transplant before I returned back but in the meantime I am definitely going to need some kind of assistance for prescriptions. Thanks again take care of yourselves 😊

[LisaSnow in reply to Redbone55]

I didn't realize Medicare has a very high copay for medications. Is it because it doesn't cover the meds you are on?

[Redbone55 in reply to LisaSnow]

Yes my medication for tacro. Is over $200 and that is for the 5 mg the 1 mg is about $40. Thanks for your reply I am definitely going to keep searching. Take care🙏

[LisaSnow in reply to Redbone55]

That is so wrong to charge that much for a gold standard drug!

[LisaSnow in reply to Redbone55]

If 1mg is $40 a month maybe you can ask for that as sole formula for your dose. For example, take 8 of the 1mg a day instead of 1 of 5mg plus 3 of 1mg.

[Redbone55 in reply to LisaSnow]

That’s a great suggestion !!

[TaffyTwoshoes27 in reply to LisaSnow]

If you get in the Medicare “donut hole”, prescription co-pays can be high.

[LisaSnow in reply to TaffyTwoshoes27]

That's not right. Tacrolimus has many generic forms and they are as cheap as drugs can be.

[Lifechanger1]

I also have a BC/BS mediblue HMO, a supplement to Medicare. It cost me $80 per month and covers most of the 20% medicare dosent. It also helps with the cost of my medication. Your income level may help you qualify for additional Rx cost reduction. Agree, try to get another social worker to talk to. Again best of luck!

[Redbone55 in reply to Lifechanger1]

Yes I have Blue Cross Blue Shield state however as I stated earlier it’s through cobra and I have been on cobra since 2019 and the premiums a month are very high which I have graciously been getting my premiums paid through the kidney foundation. I want to be able to keep Blue Cross Blue Sheilds/however due to my financial situation I am unable to pay the high premiums. But I am definitely going to look into Blue Cross Blue Shield Mediblue through Medicare, this plan may definitely work for me thank you so much for your input. Please take care of yourself🙏

[TaffyTwoshoes27 in reply to Redbone55]

What State do you live in? In Georgia, the GA Transplant Foundation can help people with insurance premiums, medications, dental assistance, etc. Have you checked with the American Kidney Foundation or NKF?

Drug manufacturers have Patient Assistance Programs. I am on dialysis and just received assistance for “Trulance” (which also had a high co-pay on my Humana Medicare Advantage Plan). I was approved (due to low income) and get it at no cost from the manufacturer.

GA did not extend Medicaid assistance, so I do not qualify (it is income based). If you don’t make much income, you may qualify in your State.

I have been on other Patient Assistance Programs. “Shire Cares” for Fosrenol. Put you medication name in Google with the words “Patient Assistance Program” to see if the company offers it.

Good luck. Many of us in here understand your dilemma. Keep the faith!

[Redbone55 in reply to TaffyTwoshoes27]

Thanks for your information. Please stay safe!’

[Lifechanger1]

Happy I could be of help. 😊 We’ve been thru enough, transplant surgery, recovery and dialysis (not sure if you were on it), but we could use more positive news to keeps up in a good mental state. You should contact your Blue Cross representative and start there. God bless you….

[Blue-Quilter]

What about your state medicaid program? My transplant was covered thru my insurance at work but I was laid off in March of 2020 when the pandemic hit. My FIRST order of business was finding health insurance as I didn't think I would be able to afford cobra. (I had done that before several years ago and the premiums were almost as much as my rent.) Someone suggested I call the state office and the worker was surprisingly helpful, even filling out the application over the phone for me as I was having trouble navigating the website. Medicaid picked up anything not paid by previous insurance, and since I was only 5 months post transplant at that point, it turned out to be a fair amount since the bills were still coming in.

I found a new job in August of 2020 and have insurance again through work. In addition, I became Medicare eligible in November so Medicaid rolled over to the Medicare Extra Help program. That may end in December because it was only approved for one year, but I may still qualify financially because I only work 36 weeks of the year. Anyway, my point is that between the two insurances, I haven't seen any bills and my prescription copays are a max of $4. Definitely something to look into. Best wishes!

[Redbone55 in reply to Blue-Quilter]

Yes I understand this has always been my first priority to make sure that I have Health insurance however as I stated before I do have health insurance through my job and it’s actually supposed to still have it until 2022 however with the premiums right now are so high I was able to have the premiums paid previously but in the meantime I was always still looking for more insurance because I never knew when the premiums will stop being paid I applied for Medicaid about five months ago and I still have not heard anything from them I called to check on my application and they stated that it will still pending. I do have Humana on standby and I am still continuing to do other resources on cheaper health insurance mainly for immosuppressant medication 💊. I also have Medicare as well through my end stage renal disease. I will just feel more comfortable having two insurances. Believe me nothing is more important to me then my health. I’m going to keep on striving I don’t give up that easily!!! Thank you so much for your advice and continue to be in good health 😊 blessings to you!!

[TaffyTwoshoes27 in reply to Redbone55]

How old are you? I was under the impression that 3 yrs post transplant, Medicare and any SSDI benefits stop if you are working and under 65 years old? I see you’re still working, but you say you were paying for COBRA (from a previous employer?). Your new employer doesn’t provide insurance, or are you saying those insurance premiums are too high?

I am now 66 yrs old, so my Humana Medicare Advantage premiums are $148.50/mo. (just like anyone else who has Medicare pays). I was on SSDI from ages 58-65 and my Humana Medicare premium was the same as it is now.

[Redbone55 in reply to TaffyTwoshoes27]

I am 55 years old and I was currently working before I got put out of work due to being on dialysis however I was able to obtain my insurance and it’s switched over to cobra which the American kidney foundation was paying the premiums. Once I had my transplant and January 2020 I was told that American kidney foundation will only pay the premiums in the year that you had the transplant so with that being said my premiums that they are getting ready to be cut off in December. Then I was contacted by cobra last month stating that I am eligible to continue with cobra for 29 months.!! The issue that I am having is I want to continue my health insurance but because the premiums are so high a month I don’t know if I would be able to afford it on my own without assistance.

[TaffyTwoshoes27 in reply to Redbone55]

Can you file for SSDI? You may only be able to stay on it a couple years since you have been transplanted but it may help you too get on Medicare. However, when you do get awarded SSDI, Medicare does not go into effect until two years after you are approved.I guess I don't know the answer, other than to apply for Patient Assistance Programs with the drug manufacturers. If you have too much income, however, you may not qualify.

[klb36 in reply to TaffyTwoshoes27]

glad gtf helped you i have been to a few of their confrences I only had help for the first 3 years of transplant my insurance went from 88 a month to 1865 dollars a month in the first 5 years of transplant i have not had any assistance since my third year of transplant 37 years now I glad you have a place to talk and share i wish there were groups when i was transplanted. the gtf was not around and support group was my family was damn lucky i have a hell of a good family . Ihope you all get the support you need

[Hidden]

The transplant team should be able to direct you. My transplant team is not very helpful. Years ago I needed help with insurance/meds and used the free clinic in our area until I could straighten out my situation. There is always a waiting period no matter what you figure out. The free clinic was really good, staffed with local medical people, of whom are volunteers. Today, I would double mask and wear gloves before I went in.

[Redbone55 in reply to Hidden]

Thank you I will keep that in mind. Stay safe and healthy!’

[Eyak1971]

Please write to your congressman or senator about your story. With a prescription drug bill now being discussed your story may have an effect on the outcome. Until you find the answer that works for you take care.

[Redbone55 in reply to Eyak1971]

Thank you for the advice who knows it definitely can make a difference

[Eyak1971]

Hopefully others Will do the same since medicare may soon be lost due to lack of Congress to act. Many of us will be in the same situation.

[Jennypenny89]

Try using the good rx app. I have medical and have to pay for the cellcelpt, prograf, prednisone..the tacro / prograf is well over 1000$ and i pay $160. Still alot, but i need that medication

[Redbone55 in reply to Jennypenny89]

Thanks I will follow up on this. Stay healthy and safe!! 😊

[Nemik]

In my opinion, the best solution in your case would be to seek advice from an insurance company that would tell you about all the offers they currently have. When I had a similar situation, I did so. I found out about the premium costs of medigap plan N (remedigap.com/medicare-supp... and purchased it, as it was the best option at that time.

I am not sure that public hospitals will be able to provide you with high-quality care after transplantation. It is better to contact private clinics that have more experience with such cases.

Take care of yourself and get well!

[Redbone55 in reply to Nemik]

Thanks for the advice!! 😊