I ran a series of articles about ways multiple myeloma patients can find financial assistance last week:
Here is a follow-up email from a reader with an additional perspective, along with more helpful tips:
I just read your blog, and commend you on assembling a wide variety of info that is so needed by many of us myeloma survivors.
When my active war with myeloma started, I was overwhelmed with the knowledge of what expenses would have to be dealt with. Being by nature an aging nerd, I compiled a large notebook full of cancer resources that has been an amazing help to me. I, too am on disability, and we both know how far that goes.
What I have found is that the myeloma network is like a large jigsaw puzzle. One known piece and a little research yield many more pieces.
The groups you mentioned have gotten me through many months of chemo, a ACST, and maintenance chemo. The later comes with a medicine regime that is $9800.00 per month for 28 capsules..an impossible expense to cover for me..but not for the Chronic Health group. My cost is $10.00 for this chemo medication.
One area that you may not have gotten into yet is that of the drug manufacturers. There are numerous programs that will provide medication needed to treat or support ones treatment for cancer. It can be started with going to rxassist.org, and following until you find your drugs , and then go from there. Simply Googleing financial help for cancer drugs will also yield helpful info.
The other suggestion I would give is that it really is necessary to put time and effort into filling out all the applications, getting signatures and medical info from your Dr. to include with the applications, and deal with the on-going paperwork shuffle. I keep a separate folder for each group that is helping me, and keep all pertinent info in that folder. Date all correspondence and note whom you spoke with.. It just makes it easier, and less confusing.
No matter which program one uses, always keep a complete copy of all applications, and reimbursement submissions . Often these programs are good at misplacing a part of you paper work, and reinventing the wheel is much easier if you have a copy on hand.
I am an unofficial cancer treatment finance resource in my small community, and try to share info with the many family’s who have had to have benefit fund raisers just so their loved one can afford to have treatment. That makes me totally crazy and very disappointed in the quality of “social work” provided in our treatment centers. It seems to me that if I can find the needed info to help keep family’s from declaring bankruptcy, then surely the social workers could provide that info too.
Please take or use any of these thought that you might wish to use.
I am more comfortable working directly with people rather than in a public forum such as a blog.
I wish good health to you and your wife, and pray for the day when myeloma becomes a “treatable chronic” disease like diabetes.
I want to thank Anne for taking the time to compose such a thoughtful response. Imagine the people she has been able to help over the years! I have since recieved two long, detailed emails from Anne, giving me advice about how to fine-tune my own financial, health care nightmare. She has some excellent ideas. How kind. Keep up the great work, Anne!
Feel good and keep smiling! Pat