Monthly Archives: January 2018

With gridlock over, time to roll up our sleeves and work for a cure

Time is compressing. I started my last post with “what a difference a year makes.” Today, I say, what a difference a week makes. I was grousing about Congressional gridlock which had shutdown the federal government. Then last Tuesday, Congress  found a way to mend fences, which means we may actually be able to move on to solving problems.

Of course, I may be speaking too soon. The fix is only temporary.  And while Congress seems determined to keep in tact funding for the National Institutes of Health that it promised at the end of 2016 with the 21 Century Cures Act, nothing should be assumed.  Hence, here are a few bills worth keeping an eye on or even picking up the phone and asking your representative for support in moving  forward. Last week, for example, I asked my congressman Rep. Leonard Lance to co-sponsor a House version of the American Cures Act to secure research funding through 2020. It took less than 5 minutes to pop him an email.

I’ve included links to each bills sponsor’s email, as well as the committee chairs, to make it easy for you to reach out, nudge along or outright ask what the holdup is. If this past year has taught us anything, speaking out leads to action. And every action is a step towards a cure.

American Cures Act (S. 640)

The bill would amend the Balanced Budget and Emergency Deficit Control Act of 1985 to allow larger increases in appropriations for the National Institutes of Health, Center for Disease Control, the Department of Defence health program, and the VA medical and prosthetics research program by making cap adjustments to discretionary spending limits through fiscal year 2021.
Introduced by Sen. Richard Durbin (D-IL)  last March, it now languishes in the Senate Budget Committee, headed by Sen. Mike Enzi.

Cancer Drug Coverage Parity Act of 2017 (H.R. 1409)

The bill would require group and individual health insurance coverage and group health plans to provide the same coverage of oral anticancer drugs (meaning pills )  that they do for IV drugs such as chemotherapy. It would prohibit health insurers from changing, replacing, reclassifying, or applying more restrictive limitations on oral anticancer medications than those imposed on intravenously administered anticancer medications.
Introduced by Rep. Leonard Lance (R-NJ) last March, it languishes in the House Energy and Commerce Committee, headed by Rep. Greg Walden. (As you can imagine, I’ve already pushed Rep. Lance on this).

Cancer Care Payment Reform Act of 2017 (S. 463)

The bill would require the Health and Human Services Secretary to establish a national Oncology Medical Home Demonstration Project under the Medicare program to improve quality of care and cost efficiency by changing the Medicare payment process to include a care coordination management fee and performance incentive payments to participating oncology practices. It would require developing performance standards for participating oncology practices based on specific measures including patient care, resource utilization, survivorship, end-of-life care, and patient experience.
Introduced by Sen. John Cornyn (R-TX) it’s languishing in the  Senate Finance Committee, chaired by Sen. Orin Hatch.

Enhanced Clinical Trial Design Act of 2017 (S. 1048)

The bill aimes to expand patient access to experimental treatments in clinical trials by enhancing the clinical trials process and providing updated guidance on eligibility criteria.

Introduced by Sens. Orrin Hatch (R-UT), Michael Bennet (D-CO), Richard Burr (R-NC), and Bob Casey (D-PA) last May, it languishes in the Senate Committee on Health, Education, Labor, and Pensions which is chaired by Sen. Lamar Alexander.

Triple-Negative Breast Cancer Research Act of 2017 (H.R. 1984)

The bill would require the NIH to expand, intensify, and coordinate programs for triple-negative breast cancer research through centers such as the Eunice Kennedy Shriver National Institute of Child Health and Human Development, the National Institute of Environmental Health Sciences, the Office of Research on Women’s Health, and the Nation. It also directs the CDC to develop and disseminate triple-negative breast cancer information to the public and HRSA to develop and disseminate triple-negative breast cancer information to health care providers.
Introduced by Rep. Sheila Jackson Lee (D-TX)  last April, it languishes in the Energy and Commerce Committee, chaired by Rep. Greg Walden.

Lymphedema Treatment Act (H.R. 930/S. 497)

The bill would amend title XVIII of the Social Security Act to provide for Medicare coverage of certain lymphedema compression treatment items as durable medical equipment.
Introduced by  Rep. David Reichert (R-WA) last February, it languishes in the House Committees on Energy and Commerce; and Way and Means.  A senate version was introduced by Sen. Maria Cantwell (D-WA) last May and languishes in the Senate Finance Committee.

Breast Density and Mammography Reporting Act of 2017 (H.R. 4122/S. 2006)

The bill amends the Mammography Quality Standards Act (MSQA) of 1992 to require mammography results include information about a patient’s breast density and  shared with patients and their physicians.
For women with results indicating they have dense breast tissue, the summary must also include language encouraging them to consult with their physician regarding whether additional screening would be beneficial.
Introduced by Rep. Rosa DeLauro (D-CT)  in October, it’s languishing in the House Committee on Energy and Commerce, Ways and Means. A Senate version was introduced by Sen. Dianne Feinstein (D-CA)  in October and now languishes in the Committee on Health, Education, Labor, and Pensions. The two have sponsored this legislation a least four times, to no avail.

Breast Cancer Patient Protection Act of 2017 (H.R. 3338)

The bill would require health plans to provide coverage for a minimum hospital stay for mastectomies, lumpectomies, and lymph node dissection for the treatment of breast cancer, as well as coverage for secondary consultations.
Introduced by Rep. Rosa DeLauro last July, it languishes in the House Energy and Commerce, Ways and Means, and Education and the Workforce Committees, the latter of which is chaired by Rep. Virginia Foxx

Deferment for Active Cancer Treatment Act of 2017 (H.R. 2976)

The bill would amend the Higher Education Act of 1965 to allow for deferment of certain federal student loans while a borrower is receiving cancer treatment as well as the six months following treatment.
Introduced by Rep. Ileana Ros-Lehtinen (R-FL)  in June, it languishes in the House Committee on Education and the Workforce.

Robin Danielson Feminine Hygiene Product Safety Act of 2017 (H.R. 2379)

The bill would require the Director of NIH to conduct or support research to determine the extent to which the presence of dioxins, synthetic fibers, chlorine, and other components in tampons and other feminine hygiene products pose any risks to the health of women who use the products or the health of their children.
Introduced by Rep. Carolyn Maloney (D-NY)  last May, it languishes in the House Energy and Commerce Committee.

 

 

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Gridlock won’t lead to a cure

What a difference a year makes.
At the end of 2016, then President Obama signed off on the 21st Century Cures Act, a bipartisan effort that appropriated $4.8 billion for cancer research and more than $1 billion to address the opiod addiction problem in the U.S.

To give you an idea of what bipartisanship looks like – it passed the House 392-26 and the Senate by a vote of 94-5.

It provided spending increases for the National Institutes for Health through 2020, and as part of that, increases for the National Cancer Institute.

Today, a year and a month later, Congress can barely agree on when they’ll meet again to vote on even a temporary spending package to keep the government open.
Even worse, President Trump’s 2018 budget calls for a 25% cut in spending to the National Institutes of Health, and more than $1 billion being cut from the National Cancer Institute.
A Senate bill proposed by Sen. Dick Durbin that would allow larger spending increases for the NIH, Center for Disease Control, the Department of Defense’s health program, and the Veterans Administration medical and prosthetics through 2021 is stuck in Senate Budget Committee hearings.
Already, the Washington Post is declaring 2018 as another year of inaction and gridlock.
Meanwhile, more than 14 million people currently living with cancer – according to the CDC – wait on the sidelines, as promising research is halted by lack of funding.
For us, gridlock isn’t a matter of frustration, it’s a life or death issue.

Yes, progress is being made each day in the war on this disease. Today, for example,  Swedish researchers announced they’ve found a way to stop a protein that helps breast cancer cells get the energy they need to proliferate. Sweden gets it.
According to the NCI, there are more than a dozen bills that address cancer issues sitting in committees. None of them are making headlines. People aren’t sitting outside of representatives offices demanding that funding be restored. Maybe a handful of us are emailing or calling our elected officials asking that more be done, our voices being drowned out by partisan bickering that’s erupted in the past year.

I don’t know how to bring civility back to politics. But I don’t intend to wait on the sidelines while each side hurls meaningless rhetoric at each other. Nor should you.

I’ll be spending the day, calling and emailing my representatives, letting them know it’s time to get research moving again. It’s time to find a cure. Because the answer is just sitting there, waiting for us. And I’m dying to find it.

Want to help?

Click here to find bills that are stuck in committee

Click here to ask your representative to do something to move a bill forward.

Breast cancer

New Year, New Me

breast cancer conscript

As I approach the anniversary of my three-year median survival rate, I realize I still have a lot I’d like to accomplish.

I’m rather goal oriented. I’ve spent the last week writing out my resolutions, filling in with action plans, reaching out to accountability partners and putting together an overall strategy for success.

My overriding theme is this: How do you accomplish big, hairy, audacious goals while juggling the interruptions of a chronic disease?

I started toying with this idea while battling cellulitis this past fall. I’d been humming along with blog posts and sticking to an editorial calendar when some rogue bacteria slammed me to the ground. All work ground to a halt as I tended to fevers and daily trips to a distant doctor for IV antibiotics.

When I finally overcame the illness I was stuck for a way to get my work life back on track. I know this isn’t unique. One of my mentors lost her job in October and spent the fall and early winter in a frantic search for a new one (which turned out to be a plum assignment at the New York Times).  But for those of us with chronic illness, those life bumps are a constant.

Already I’m resigned that at some point this year my treatment will change. My tumor markers are starting to creep up again even though CT scan results from a few weeks ago show no progression. Still, each CT scan is a game of Russian roulette. The barrel may be empty this time, but one of them has a bullet in it. One of them will be treatment altering and with it a new round of  time-consuming tests, procedures and new side effects to get used to.

On top of the fits and starts of chronic disease, I have the frustration of believing I deserve better outcomes for all the limbs I’ve climbed out on. I deserve success. I knew I was starting to get better this fall when my frustration turned to anger. And anger makes me want to do something different, make a change.

So I compiled a mini-MPA  program- Masters of Philosophical Arts. Thanks to Coursera, a Web site that offers free college courses, I took classes on Resilience, Success, Becoming a Changemaker and Digital Storytelling. They were intriguing and helped me fill in the potholes that keeping me from moving forward on the road to success.

Now I’ve developed a cheat sheet of tools, questions, exercises I can do to refocus my thoughts, chase away the anxiety, regroup and reset. It’s a different approach, one that hopefully leads to different outcomes.

Because this year I do have big, hairy, audacious goals. I plan to finally finish and publish that novel I keep talking about and move on to writing a new one. I plan to launch a podcast, interviewing authors who will be appearing at local bookstores.  I intend to launch a new toy on Amazon. And once I learn how to do that, I intend to launch even more products.

I intend to run a half-marathon with my husband, my sisters and their husbands. And in the summer, there will be triathlons – emphasis on the word “try.”

I intend to become an expert at a few things this year. One is options trading, an adventure that my husband and I have both embarked on learning.  The other is digital marketing.

I intend to be grateful for the things I have, including good health and a stable disease. Statistically, my lifespan is only a matter of months and I have watched sister warriors fight shorter battles and lose.

Most of all, I intend to stay healthy despite what this disease and its side effects may throw at me. Because I still have a lot to do.

 

 

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