Oncofertility- An update on some advocacy work

[rymd]

Fellow Radonc’ers-

An update regarding some advocacy work we have been working on through the AMA for our patients.


The problem: Standard-of-care is for us to discuss with our patients, especially the AYA’s (adolescent and young adults- 15-39 year-olds) the effects of treatment on fertility, and fertility preservation options (oncofertility). We think we are doing a good job (http://www.practicalradonc.org/article/S1879-8500%2811%2900356-0/abstract) though the raw numbers, that only 2-4% of women actually get fertility preservation therapy, tell us a very different story… (http://onlinelibrary.wiley.com/doi/10.1002/cncr.26649/abstract and (http://jco.ascopubs.org/content/30/17/2147.full)

One of the primary barriers for our patients is that insurance carriers will not routinely cover oncofertilty- even in states with mandated infertility coverage. To this end we presented a resolution at this year's AMA annual meeting that our AMA create policy such that oncfertility be included in coverage by all payers. We built a large coalition with oncologic, women's health and some state societies supporting the resolution. It was passed by the AMA Residents and Fellows section (RFS) and immediately forwarded to the AMA House of Delegates (HOD).

After some lively discussion and debate, a decision was made to reaffirm a broad AMA policy D-330.918 in lieu of our resolution (i.e., AMA policy D-330.918 Appropriateness of National Coverage Decisions 1. Our AMA will work with the national medical specialty societies and the Centers for Medicare and Medicaid Services (CMS) and their intermediaries to identify outdated coverage decisions that create obstacles to clinically appropriate patient care.)

It was an exciting week -- we managed to create significant awareness, dialogue and debate about this very important and timely issue. On our side, we will continue to work with the specialty and state societies to further advocate this cause for our patients. Our goal is to remove the obstacles they face in receiving the care they need.

Overall it was a great experience- working the policy route to actively help our patients. Please let me know if you have any interest in helping move this issue forward.

[Plug Alert] Also, if there are any other cracks in our system you want to see fixed - get involved with the AMA and use this powerful venue! You can join the AMA as a resident member for $45 (http://www.ama-assn.org/ama/pub/membership.page). Many of us will have membership covered by their institution or state societies- so don’t hesitate to ask.
Personal benefits of becoming a member: JAMA subscription and many leadership opportunities on a state and national level.
Radiation Oncology benefit: This will also help ensure that ASTRO maintains a delegate in the general House of Delegates, Young Physician Section, and Resident and Fellow Section.

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[Mandelin Rain]

Also, if there are any other cracks in our system you want to see fixed - get involved with the AMA and use this powerful venue!

Ummmmm......

 

[rymd]

Unfortunately, i think this is an issue where people need to realize that if we continue add requirements that insurers have to cover, the cost of health insurance will continue to rise and we will further price individuals and family out of quality insurance. At what point should we expect that some of the ancillary costs associated with our own health should be addressed out of pocket? I certaintly understand where you and the AMA are coming from with this issue, may take on it is that I would rather pay the potential cost for myself and/or spouse out of pocket and not expect all of they payers to pay for this. This is why people need to commit to saving funds so that when life changing situations arise they can absorb some of these costs.

Wagy: Excellent points. With regards to fertility preservation, the reasons it should be covered are two-fold.
- It is a survivorship concern, and the precedent to cover it can be drawn from the fact that breast reconstruction/augmentation is routinely covered after breast cancer surgery. http://www.ncbi.nlm.nih.gov/pubmed/20142588
- Knowing that they have their "future" banked may have a profound effect on quality of life http://www.ncbi.nlm.nih.gov/pubmed/21887678

Ummmmm......

MR: To respond to your hesitancy/ unasked question- (assumption being that you agree there are cracks in the system) the AMA is the organization that has the ear of the decision makers. Agree or disagree, it is foolish to not have your voice heard. The surprising part is how loud ones voice is if they show up. As an example, the RFS had 111 delegates at this past year's annual meeting- representing the more than 35,000 residents and fellows in this country. That's about 2 per state.

PM if you have any specific questions!

 

[Seldon1985]

I certainly agree this is a problem. I've had fair number of younger patients who I have discussed oncofertility with and referred to a oncofertility expert. The problem is that the vast majority of patients I have worked with dont have the resources, or are unwilling to spend the resources to get what they need done.

Unfortunately, i think this is an issue where people need to realize that if we continue add requirements that insurers have to cover, the cost of health insurance will continue to rise and we will further price individuals and family out of quality insurance. At what point should we expect that some of the ancillary costs associated with our own health should be addressed out of pocket? I certaintly understand where you and the AMA are coming from with this issue, may take on it is that I would rather pay the potential cost for myself and/or spouse out of pocket and not expect all of they payers to pay for this. This is why people need to commit to saving funds so that when life changing situations arise they can absorb some of these costs.

This really does raise the main issue about insurance: do we expect that health insurance will cover just about all treatments/procedures? Or do we think we need to move towards a health insurance that covers core benefits, with partial coverages of other services? Although costs of coverage are starting to plateau in several sectors of medicine, we're used to having health insurance cover everything (ie 'all' care after paying insurance premium is free), making it very difficult to introduce ancillary services that are important but may have some cost out of pocket. A doc I worked with set-up a great email portal for patients (secure, easy to access). Because of its secure software, there was a slight per capita cost that patients still refused to pay - and they then wondered why they couldn't just use gmail instead (ahem, HIPAA). I recently saw a Medicaid patient who was happily showing me his/her new $40,000 car. However, when asked to pay into the health care system or pay for important partially/uncovered ancillary services, the fiscal situation changes. Wagy's right in that its important to save but most would not use those savings for important health care related expenses (again, thats their decision)... Its a tough situation, but continuing to broaden coverage of expensive treatments means that the payout costs of the risk pool increase, meaning either higher premiums, a cut in provider reimbursement, or (more likely) both. Insurance companies will continue to want to maintain their margins (which, btw, is still within the top 25 industries in the US).

Based on your work rymd, how many patients would be eligible for such treatments and how many of those do you think would make use of these oncofertility services if insurance covered them? (i.e. the impact of covering these services?)

 

[rymd]

Based on your work rymd, how many patients would be eligible for such treatments and how many of those do you think would make use of these oncofertility services if insurance covered them? (i.e. the impact of covering these services?)

Great questions.

In general the number discussed is 70,000- which is the number of adolescents and young adults (AYAs) diagnosed with cancer each year. The number who would need oncofertility treatment is probably far smaller. It is an ongoing question to define the actual number of people who would/should get fertility preservation therapy. A pretty cool risk calculator can be found here: http://www.fertilehope.org/tool-bar/risk-calculator.cfm

Regarding the impact of insurance coverage on the numbers- again I don't have any hard numbers. The costs for men is pretty low- a few hundred dollars, while the costs for women is much higher- about 10-12 thousand dollars. Compared to the costs involved in treating a young women with breast cancer which can be upwards of 700,000$, its pretty insignificant. The anecdotal evidence based on conversation/ experience is overwhelming as coverage being a big part of why these folks (both men and women!) don't/ won't get the care they need.


[THOUGHT] If it truly is a limited pot of money, and we have to choose, I wonder if patients would be OK with getting partial treatments using IMRT followed by a 3-D boost, saving thousands of dollars- and allowing to have the survivorship care they need. The answer may depend on if we view care as being patient-centric vs provider-centric. I would challenge that if we followed a patient-centric model, we would actually make a lot more money. This is the model created by apple- where the user experience is what drives the product- which has created untold wealth for the providers, and very happy customers.