Cancer Advocacy Update

My friend Beth has been denied the chemotherapy drugs her doctor is recommending she get to treat her metastatic breast cancer. Her insurance company, +Blue Cross and Blue Shield Service Benefit Plan doesn't think she should have them. They did a cost-benefit analysis, apparently, and decided Beth's life wasn't worth it. I think that about sums it up.

I am angry, and you should be too.

***

Photo by Stan Mouser

I flew to DC last week and spent all day Thursday at a policy roundtable to discuss the future of cancer policy post-election. What happens to the Patient Protection and Affordable Care Act (ACA/Obamacare)? Will Vice President Biden's Cancer Moonshot still get funded? Is Paul Ryan going to be successful in privatizing Medicare? Will the Medicaid expansion go away?

Mostly, I listened, because there were some serious wonks on those panels, women and men who've spent their entire careers focused on healthcare policy and how to improve the system. I also asked a few questions. 

Deep into a discussion on "high-risk pools" and the need to draw in "young immortals" to decrease overall insurance costs, I raised my hand. 

"Hi. I was one of those 'young immortals' until I was diagnosed with metastatic breast cancer at age 32. Metastatic cancer in young people is on the rise, but people are also living longer with cancer. Cancer is expensive. What about lifetime and annual limits, which are currently prohibited under the Affordable Care Act?"

To which the response was, essentially, "Your life matters. I'm sorry for your experience. But trade-offs will have to be made."

Trade-offs. This is what we're up against, folks.

***

Here is what I learned, although nearly every speaker admitted we are all trying to read tea leaves at this point. No one really knows what a Trump administration is going to look like, but we do know that the Republican Congress of the last several years has voted to repeal the ACA more than 60 times. 

One panelist likened it to a dog who finally caught the car. The question is what does the dog do now? 

1. Repeal and replace was just a campaign slogan. The general consensus was there is not currently any republican agreement on what to replace the ACA with. So there will be efforts to repeal, possibly with a phasing in of something else down the road. There are legislative tricks up those republican sleeves, including a way to repeal without the requisite sixty-vote majority typically needed in the Senate. Get poised to hear budget reconciliation a lot. And if you don't currently have insurance coverage and think you might want it, APPLY FOR COVERAGE NOW. Keep current on your payments. Those with existing coverage may be grandfathered in to new legislation, if and when new legislation is introduced.
2. Medicare (and Medicaid) as we know it is at risk. Speaker of the House Paul Ryan has repeatedly made it clear he wants to overhaul Medicare (likely to privatize it, similar to what happened with our prison system. That didn't work out so well.) Another panelist said she'd be shocked if this happens in the same year as a repeal of Obamacare, but it's still at risk. While many panelists cautioned that republicans gut Medicare -- and potentially alienate the AARP crowd -- at their peril, Paul Ryan and company seem determined to move on this one. And if the ACA is repealed, so goes the Medicaid expansion. 
3. Cancer Moonshot funding is a concern. Congressional appropriations for fiscal year 2017 are at a stand-still because of the election (with another continuing resolution expected before December 9th), and didn't include specific funding for the moonshot anyway. At least one advocacy organization is urging its followers to reach out to Congress and demand a vote on NIH funding this year, rather than flatline the funding at 2016 levels. Another opportunity for funding the moonshot is the 21st Century Cures Act, which increases funds in exchange for decreasing regulations at the FDA. But prospects for that legislation during this lame-duck session are murky. I feel like I'm giving you answers straight out of a Magic 8 Ball: reply hazy try again. 
4. Speaking of the Moonshot, MATCH Trials have begun. These clinical trials aim to analyze patients' tumors for genetic abnormalities for which we already have targeted therapies. We might have data from these trials in as soon as one year. The current acting director of the National Cancer Institutes is planning on staying on in this administration as long as possible. Typically, it takes new presidents about a year to replace these appointees.
5. Advocacy is more important than ever. Every speaker mentioned it. We need to tell our stories and show that we are more than just a cost in the cost-benefit analyses that Congress and insurance companies are doing. We need to talk about why the Affordable Care Act is important (protections against prohibiting coverage for pre-existing conditions and bans on annual and lifetime coverage limits are my two gems). Is the ACA important to you? TELL YOUR STORY HERE. And write, email, or tweet Congress to tell them your concerns. 

***

After a full day of policy information that was admittedly bleak, I went with a representative from MetaVivor to meet a friend on Capitol Hill. We talked about how her office can help us in the cancer community. We have allies on the Hill who understand how expensive treatment is, who know women (and men) are dying by the hundreds every day, and who want to keep the protections that have been in place for several years now. They (and I) also understand the current system isn't perfect, but we don't believe the answer is cutting off protections and coverage for millions of people. 

People like my friend Beth cannot afford gaps in insurance, let alone insurance that isn't working for them and denying treatments. Another friend told me she would stop treatment rather than bankrupt her family, if she lost her access to Medicare. My friends are having to think about making the choice to die or pay their bills.

We have work to do.

Around the Web

In the chaos of the last week, I realized I've fallen behind on posting my finds from around the Internet (which I referred to as the "web" in a conversation with my college-age nephew this weekend, and he looked at me like I was eighty). Here are the things that have grabbed my attention over the last couple of weeks. There has been a lot, given that it's Breast Cancer Awareness Month, so I've tried to whittle it down.

Would YOUR Bank Account be Okay if You Were Diagnosed with Cancer?

I am so incredibly fortunate that we have excellent health insurance. The year I had my bilateral mastectomy, insurance covered more than $250,000 worth of bills for us. My targeted chemo costs more than $10,000 per month. Not to mention, most people (me included) struggle to maintain a job while going through treatment, so then how do they maintain health insurance coverage if they're not married? The Affordable Care Act was a solid first step, but more could be done to ensure access to care without fearing that you'll have to file bankruptcy.

The Results are In: Perjeta Extends Lives

"Patients who received the drug — Perjeta, from the Swiss drug maker Roche — had a median survival time nearly 16 months longer than those in the control group.

That is the longest amount of time for a drug used as an initial treatment for metastatic breast cancer, the researchers said, and it may be one of the longest for the treatment of any cancer."

While this drug worked for me, I ultimately had a recurrence while on it. But I am doing remarkably well on the next-generation of drug produced by Genentech/Roche (Kadcyla). We need continuing research into how to stop metastatic cancer.

Research Like This Promising News Out of Stanford

"Years of work lie ahead to determine whether this protein therapy can be approved to treat cancer in humans

But these early, hopeful results suggest that the Stanford approach could become a nontoxic way to fight metastatic cancer."

Because Too Many of Us Are Still Dying

"Marathon Barbie," as she was known, was serving our country in Kandahar, Afghanistan, when she found her lump. Maybe it's because my baby brother just came home from there that this story hit so close to home to me. You don't expect cancer to be the thing that kills you when you deploy to a war zone.

"Chemoprevention" May Be One Possible Answer

Would you take an estrogen-blocker if you knew it would cut your risk of developing cancer?

Komen Donates to Research, After All

I'd like to see more stories like this, please. 

"Susan G. Komen has awarded more than $2 million in grants for cancer researchers at the University of North Carolina at Chapel Hill and Duke University, the breast cancer organization announced Wednesday."

Circulating Tumor Cells Give Insight Into Metastases of Pancreatic Cancer

Lest you think I only care about breast cancer. 

"Harvard Medical School investigators at the Massachusetts General Hospital Cancer Center pinpointed several different classes of pancreatic CTCs and found unexpected factors that may prove to be targets for improved treatment of the deadly tumor."

Have You Noticed Less Pink This October?

Lots of us think it might be best for the NFL to focus on other issues in October (like, say, domestic violence) rather than parading a bunch of pink stuff in the name of awareness while only donating a paltry percent to actual research. What do you think? What have you seen?

And Another Take on What "Pink" Has Done for Us

"so before you gag at all the pink products this month, know that many help raise a lot of money. do your research. it’s like the ice bucket challenge. it’s cool to do it and send in a donation. not as cool to do it just to be funny and not contribute a penny. if you can afford a device to record a video, you can afford to donate $5."

Around the Web

{photo credit}

Here's what I found on the web this week. Every week, I hope it will be the cure, but I do believe we are getting closer. Let's just get there faster.

Is This Why Brain Mets Occur? Is This How We Can Stop Them?

"Now Memorial Sloan Kettering researchers have found that a protein called cathepsin S may play a key role in the spread of breast cancer to the brain. A complex interplay between breast cancer cells and certain surrounding cells called macrophages induces both cell types to secrete increased levels of cathepsin S, an enzyme that promotes the cancer cells’ ability to metastasize.

In addition to potentially helping doctors predict which breast cancer patients are at increased risk for brain metastasis, the discovery, published recently in Nature Cell Biology, suggests that cathepsin S could be an important target for new drugs."

Why We Need More Words to Describe Living with Cancer

What words do you use to describe your breast cancer journey? Battling? Thriving? Surviving? Suffering? Treating? All of the above? 

For the most part, I think to each her own when talking about cancer and otherwise, but I do think the author here is right: Amy Robach, by virtue of her position as a journalist, has a special responsibility to choose her words more carefully.

Public Service Announcement: Pfizer Initiates Expanded Access Program for Treating Certain Advanced Breast Cancers

"Under its expanded access programs, the U.S. Food and Drug Administration (FDA) works with companies to allow access to investigational therapies to patients with serious or life-threatening illnesses who do not otherwise qualify for participation in a clinical trial and for whom there are no comparable or satisfactory alternate therapies."

This particular drug, palbociclib, is for hormone-positive, HER-2-negative breast cancer patients.

Breast Cancer is Really (at Least) 10 Different Diseases

While it's inspirational to hear, "My aunt had breast cancer 10 years ago and is doing great now!" it probably doesn't have any bearing on how someone else diagnosed with breast cancer today is going to fare. As I keep reminding myself when I see my friends dying -- whose cancer is, on paper, very similar to my own -- every disease blueprint is unique.

How Much is a Cancer Drug Worth? The UK is Reevaluating.

"Big manufacturers set to be affected by the changes include Roche, which came under fire this month from Nice [National Institute for Health and Care Excellence] for failing to cut the price of Kadcyla. The £90,000 per course drug is for women with advanced breast cancer. Nice rejected the drug as failing to offer value for money at that price."

I am eternally grateful for the quality of my health insurance.