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Judycares Asked November 2021

Financial impact effects of treatment for rare disease. How do you make choices?

After a year of doctors and tests, my husband has finally received a diagnosis . It is a rare form of amyloidosis. The treatments available to him involve astronomical cost. ( One at about $35,000/month, the other at about $9,000/month). We don't yet know which drug will be proposed for treatment. We have supplemental Medicare insurance as well as a Medicare RX plan, but even at a payment coverage of 30 or 40%, it could eat up our retirement money in short order. How do we talk about this? My husband is 84. The disease, left untreated, is fatal (longevity is determined by organ involvement ...which we don't yet have answers for). I don't want to lose my husband nor do I want him to suffer. I am 72 years old and in relatively good health. We made sacrifices to save so we would have enough to provide for our needs a few years beyond the statistical projections for average life span. How do we approach decisions about how much we are willing to spend of our (most likely my) future. Has anyone else gone thru this? I am agonizing over this. At this point, my husband does not know the disease is fatal if not treated. We have a teleconference with his neurologist to discuss next steps. Should I bring it up during the conference? Should I wait to see how the doctor approaches it?.

MargaretMcKen Nov 2021
Dear Judy, I’m sorry that things have got so much worse. I hope that this comment won’t upset you even more, but it’s a balance thing.

Tony and I met a man at a training session for our local farmers. He said to me that he was there for interest, as it wasn’t relevant any more. His mother had died from a rare type of cancer. His family had sold the family farm for funds to send her to the USA for an experimental treatment not available in Australia. She died anyway. He said ‘We did what we thought was right at the time, but it’s very difficult now’. That’s enough to say.
MargaretMcKen Nov 2021
PS I’ve just been outside to tell Tony about your troubles. He sends his sympathy and his hopes for you and your husband to be strong. He wishes this was as ‘solvable’ as the ramps. He said "Sometimes it’s easier to be told there’s no hope". Love to you both from both of us.
Countrymouse Nov 2021
Judy, I'm so sorry that this happened.

Left untreated the disease is fatal. But, unless a lot has happened that hasn't made the news, I believe that treated the disease is fatal, too.

I assume the decisions to be made are, quite properly, your husband's? Don't let him be railroaded (or terrified, or mesmerised) into anything. Make sure he takes all the time he needs to digest the information you're given.

It's a sure test that a subject is uncomfortable to think about when Lionel Shriver has written a book on it. Her novel "So Much For That" deals exactly with the question of how much medical treatments cost and what we get for our money.

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vegaslady Nov 2021
Look up tafcares.org and the Healthwell Foundation.
Judycares Nov 2021
Bless you!
Isthisrealyreal Nov 2021
Did you use an insurance broker for your rx plan and supplemental? If yes, call and ask them how this would work and if there is a better plan available for the current situation.

I don't think you will be paying 30-40% for every month. Once you get in the donut hole it is only 25% this year and then past that it varies.

I would also check about treatment in Canada or Mexico. The USA pays for all the R&D for these drugs, forever we get screwed on meds. However, you can cross the border and save thousands upon thousands for the exact same drug, from the same manufacturer.

Also, do research on Medicaid. Go see a certified elder law attorney ( www.nelf.org is where you would locate one) and find out what legal options exist for your situation.

Best if luck with your husband's treatment.
Judycares Nov 2021
Thank you!
Clairesmum Nov 2021
I wouldn't recommend bringing it up with the MD on the teleconference.
Generally they don't want to know the costs of care, and are not familiar with resources. They usually are willing to fill out a health form if needed to qualify for a rebate on the cost of the drug, etc.
Getting the information from MD on what he recommends as initial treatment plan gives you a drug name and dose, how often it is taken, etc.
I think a social worker who is associated with the medical center where the neurologist practices would be the person to talk to.
Or the billing office, to ask them what they know about financial resources for patients with this disease....
Or locate a support group on line for amyloidosis - these rare disease groups are often the best source of information for many aspects of disease and treatments. And coping.
Finally, once you have the drug name, google it. The company that makes/sells it may have a program to reduce cost...some of those drugs are so expensive that very few people can pay the full price.....
try www.needymeds.com is a nonprofit agency that lists discount plans, etc.
Good luck.

GardenArtist Nov 2021
The Amyloidosis Foundation has some links:
https://amyloidosis.org

Patient Resources may be of some help:
https://amyloidosis.org/resources/

Resources including website and support groups (I would check this out)
https://amyloidosis.org/resources/#websites-and-support-groups

This may be of help:
"The Assistance Fund https://tafcares.org/ 855-845-3663    Provides various services to help patients with chronic or serious illnesses cover the cost of FDA-approved medications."

https://amyloidosis.org/wp-content/uploads/2021/07/Section-5-Resources.pdf

This seems to be a good resource site; I hope it offers some options for you.


As to your questions to the neurologist, I would do as much research as possible before the teleconference, by most important categories first, and ask if the neurologist has suggestions on where you can get help or information on some of the less technical medical issues (financial assistance, groups, etc.).

You might also ask if the neurologist is aware of hospitals or clinics that may focus on this condition, adding that you're also looking for support groups (which I'm assuming might a consideration).  

In my area, some of the larger hospitals, especially one particular teaching hospital, had a variety of support groups.  This was before the pandemic though, and I haven't checked to determine if the support groups were still in place.

You asked how to approach the issue.   I would wait until you have more specific data from the neurologist, such as the number of organs involved, the extent of involvement, possible pain, debilitation, and other complications, and which organs or aspects the proposed meds will target, as well as side effects, likelihood of maintaining status quo vs. improvement or control, etc.  

If and when you have more information it will be easier to discuss it with your family.   Then you can consider the options.


It must be sad to learn of this diagnosis and the options; you approach this in a step by step and positive manner with what  I suspect are good organizational skills, and I hope you are able to find some support through the cited links.

Best wishes for hopeful news, family and friends' support, and also for a mild level of treatment....and hopefully treatment that's in some way financially feasible.
Judycares Nov 2021
Thank you for the links. I will definitely look at them. I have spent 10s of hours sifting through medical journal articles, cross-checking peer reviews. I've keep a comprehensive list of useful search terms and have a notebook that I keep all his test results in as well as relevant research papers, notes to myself, and questions for the doctor. Thank you for mentioning the organization involvement in relation to whether or not I should bring the mortality aspect into the conversation. You are entirely right. The more I research...the more questions I have. Things seem to move slowly with regard to feedback and turnaround times. I suppose I'm always ahead with new questions before I've received answers to the first. Your input, and all the rest I receive here are appreciated so very much. I think it helps to keep me balanced.
vegaslady Nov 2021
I would ask the doctor about the prognosis, treatment options and the costs and the likely outcomes. Don't expect him to break down all the aspects of this without prompting.. If this can't be cured can symptoms be controlled, at what cost finally and in side effects of treatment. Would treatment extend the length of life but negatively affect the quality of life? Would he want to go all out on treatment and leave you broke? Are there any clinical trials for treatment or cures? Many pharma companies have patient assistance programs and you could explore those. The choice he might make is to not treat his condition and you may want to accept that and help both of you come to a place of peace on that. It's a time for frank and honest discussion and some counseling may be available to help work through the decisions. There may be a social worker available to be a counselor and case manager through your insurance or the medical facility.

Clairesmum Nov 2021
I wouldn't recommend bringing it up with the MD on the teleconference.
Generally they don't want to know the costs of care, and are not familiar with resources. They usually are willing to fill out a health form if needed to qualify for a rebate on the cost of the drug, etc.
Getting the information from MD on what he recommends as initial treatment plan gives you a drug name and dose, how often it is taken, etc.
I think a social worker who is associated with the medical center where the neurologist practices would be the person to talk to.
Or the billing office, to ask them what they know about financial resources for patients with this disease....
Or locate a support group on line for amyloidosis - these rare disease groups are often the best source of information for many aspects of disease and treatments. And coping.
Finally, once you have the drug name, google it. The company that makes/sells it may have a program to reduce cost...some of those drugs are so expensive that very few people can pay the full price.....
try www.needymeds.com is a nonprofit agency that lists discount plans, etc.
Good luck.

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