Table 2.

Patient-driven Recommendations for Improvement of Insurance System for Women with a History of Breast Cancer^*

Domain	Specific Focus	Representative Quote (age, lymphedema status, economic burden score when available)	Specific Recommendation
Insurance	Insurance Navigation	I think insurance is always a challenge because-- I'll give you one example…I went to my gynecologist … And he ordered for me to get an MRI because I can't do a mammogram, having implants. We got the MRI and the insurance refused to pay for it…I went through all the appeals I could. I even talked to one of our state representatives, because I fought it as rigorously as I could, and I ended up paying over $2000 out of pocket…I sent them pages and pages of information… it was consuming so much of my time...Oh, it was endless…. it was the emotional feeling that an insurance company could do that to you… [Frances, Age 56, -BCRL, Economic Burden Score (EBS): 0]	Provide assistance understanding insurance coverage
		Yeah. I wish there was someplace that you could either go, or call, or whatever, that really understood how Medicare worked…[Jill, Age 73, -BCRL, EBS: 7]
		What could have helped me? Just more financial aid, really, because, like I said, when I first started out, I was with [one insurance], and they were taking care of it. I was getting the bras. I was getting the sleeve. Then all of a sudden, poops [no more coverage for those items]. [Meredith, Age 68, +BCRL] My COBRA had expired…I couldn't afford to pay a thousand dollars a month for insurance… Then, when I turned 65, I was qualified for Medicare. But Medicare…. But I didn't have half of the coverage that I had [before]….So the first thing I would say is to really check out what kind of insurance plans you have. Because I think it really does make a big difference. [Francis, Age 66, +BCRL, EBS: 2]	Provide assistance with navigating changes in insurance
	Quality of insurance coverage	… they wanted me to have shots of Neupogen and that wasn't covered, but then apparently it was covered under major medical…But that could’ve been a problem, because I think at the time the shots were, like, $1,500 apiece. [Eve, Age 59, -BCRL, EBS: 0]	Ensure high-quality insurance coverage
		My copays were not that expensive. Like I said I had a pretty good insurance so actually they paid for most everything. I believe at the time my copays were actually like $10. [Rachel, Age 49, +BCRL, EBS: 0]
		…Exercise, that's really important. I exercised a lot before I was diagnosed, so maybe that kind of sort of helped me and then I continue to-- as much as I could, when I felt real good. [Elizabeth, Age 55, -BCRL, EBS: 0]	Insurance coverage or financial support to promote accessibility to physical activity
	Affordable insurance coverage	I really do not think that issues that are direct outcomes of the type of cancer, people should have to have a co-pay for them to be treated, that you should have these exorbitant rates. [Susannah, Age 62, -BCRL, EBS: 4]	Keep co-pays, premiums and deductibles low
		This year, for my daughter (20), and myself it is $820/month for insurance with a $6,000 deductible [Symbol] this year we got kicked out to the marketplace (ACA) and could have gone with a cheaper policy but I was afraid if I get sick, then what happens? [Frances, Age 56, -BCRL, EBS: 0]
		The only thing that wasn’t covered was… a shot that I had to take the next day [after chemotherapy treatment] and it was called a Neulasta shot, and that shot was a hundred dollars and for-- I think for someone that’s not employed, that would be a difficult fee for them to have to pay, but since I worked, you know, it really wasn’t, like, a burden or anything.” [Elizabeth, Age 55, -BCRL, EBS: 0]
	Insurance coverage for and access to lymphedema treatment	I can’t buy-- can’t afford. I just can get the one.. I say every six months, yeah, you should at least be able to purchase another one. [Meredith, Age 68, +BCRL] My insurance didn’t cover the garment, and, you know, the sleeve, and the wrappings, …and that was, like, $300 and some …And then I had to buy the bandages, the tape to go with the bandages… $95 for the bandages, and then the tape that you buy to wrap the bandages, the Ace, that runs to, like, $5 dollars a roll for the tape, you know… sad to say, I don’t follow through with it. I haven’t followed through. [Phyllis, Age 73, +BCRL, EBS: 2]	Expand coverage for lymphedema-specific materials
		The problem is with the Medicare and the secondary insurance…They only pay for X amount of [physical therapy] visits, so once you use them up, you can’t go back. You have to wait ‘til the next year. [Phyllis, Age 73, +BCRL, EBS: 2] So I went to a [physical] therapist, who at that time …was all out of pocket. And it was significant, I went months and months… I was seeing her three times a week initially…during the first, I would say five, six years after my cancer diagnosis. It was a lot of out-of-pocket expense, which was not covered by insurance…it would have been helpful if insurance had paid some of that [Rosemary, Age 67, +BCRL, EBS: 0]	Expand coverage for long-term lymphedema management
		So I had used acupuncture in the past, so I did go to Doctor ** for acupuncture…after three treatments, the fluid did go down in the hand...I believe in integrative medicine, and complementary medicine... Eastern and Western [Rosemary, Age 67, +BCRL, EBS: 0]	Expand insurance coverage for alternative treatments

+BCRL=diagnosed with breast cancer-related lymphedema; -BCRL=no history of breast cancer related lymphedema; EBS=economic burden score

^*To protect the confidentiality of study participants, pseudonyms are used in reporting the results.