Category Archives: File under battle half won

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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Medical debt

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The high cost of the Whack-A-Mole Disease

medical debt   If I haven’t said this before (truth is, I probably have) let me say now. Cancer is a Whack-A-Mole Disease.
Just when one part of it comes under control, another aspect arises. In my case, the drugs I’m on are working to keep those rogue cells in check (good) but I’ve now got huge medical bills as a result (bad).
Part of the issue is the way Memorial Sloan Kettering chooses to bill my treatment as an outpatient procedure (which rakes in more money for them) rather than a doctor’s visit (which would only cost me $50).
That’s the problem with healthcare, you can’t really “shop” around for the best price. There’s no menu with options and costs. Instead, you go to your appointment, believing you’re going to be billed a $50 co-pay only to get a bill that has several zeros at the end (not including decimal points).
When I called billing to complain, I got a standard reply. “That’s how we bill it.  You’ll have to check with your insurance company.”
I’ve called my insurance company, my insurance agent and a third party vendor that assesses insurance costs. All say it’s how the hospital is choosing to code it.
If everything stays as it is, I’ve just about blown through whatever money I had to spend getting into a clinical trial and I’m feeling panicked. With these drugs working, clinical trials are off the table. At some point they’ll stop working and, again, I’ll be looking to get into one, but I won’t be able to afford it.
Add that to the national debate going on at the moment about changing the Affordable Care Act which will also tie availability of treatment to my ability to pay. It’s a wonder I can sleep at night with the worry that’s consuming me.

I’m not the only one who feels this way. According to results released during this year’s American Society of Clinical Oncology conference, the top concern reported by melanoma survivors was  money, with 69% reporting that they were concerned about insurance and financial matters.  The study found that:

  • 57% depleted their savings
  • 20% borrowed against or used retirement money
  • 17% postponed filling prescriptions
  • 13% skipped medicine dosages at least sometimes
Those who experienced the most distress made less than $60,000. Forty-two percent said they could use financial assistance,  but only 28% reported that their health care team spoke to them about it.

So how do I choose to tackle it?  As my mentor, Tina Jordan – who climbed out of $1 million in medical debt. I’ll tell her story tomorrow – reminded me, “I’m a journalist. Let me approach this like a journalist.”
Last week, I went straight to the top. I wrote a letter to MSK’s CEO Dr. Craig Thompson. I explained the issue, included copies of the bills and a synopsis of my insurance plan. I’ve learned from experience that CEO’s will direct it to the attention to someone at the top of the food chain, the vice president of billing most likely. Someone who has a different answer than “that’s just how we bill it.”
Tina gave me some ammunition as well. There are consumer protection laws in New York that prevent hospitals from “balance billing” which means coming after patients for more money than what they’ve agreed to pay based on their insurance contract. I’m keeping that info in my back pocket.
My goal at this point is to negotiate a discount so I’m paying what I thought I’d be paying. If billing won’t work with me, then I’ll apply for financial assistance. Tina did. She said even with gold standard health insurance and the lucrative jobs she and her husband had, she did qualify. That’s encouraging.

I don’t know how long it will take to resolve this. Already I’ve enlisted the help of a patient advocate offered up my my insurance agent. She’s survived Hodgkin’s Lymphoma, so she knows the deal.

I also look at it this way. As long as I owe Memorial Sloan Kettering money, they have skin in the game to keep me alive and well. In this, I’m hoping for a happy ending.