Right to Try is a lie

I will prevailWhen the President signed the Right to Try law at the end of May, I suddenly went from persona non gratis as a #preexisting condition to a terminally ill darling  whose life Congress and the administration were gushing to help save.

That was until yesterday when I actually tried to use the law to my benefit.

Maybe you’ve heard of this thing called “Precision Medicine” which is ushering in a new age in cancer treatment. Thanks to DNA decoding, cancer patients like myself can have their tumor’s DNA decoded to see if it offers any new information for treatment options.

In my case, new pathology shows my tumor is 100% androgen positive, in addition to being estrogen positive. That means the tumor, now deprived of its estrogen feast because of the numerous anti-estrogen drugs I’ve been on, is now slurping down androgen to survive.

The problem is the anti-androgen drugs on the market are so far only approved for prostate cancer, not breast cancer. There are clinical trials underway for breast cancer, but I don’t qualify for them.

That’s where the Right to Try law offered some hope. Its goal, at least we were told, was to give terminally ill people like myself the option of trying drugs that weren’t yet approved by the FDA for treatment of my type of cancer, but had shown promise. All I needed to do was sign an informed consent that said I am willing to serve as a guinea pig and accept all the risks that come with it.

I knew going into it there would be appeals and denials. One thing I didn’t expect was how cavalier my pharmacy benefits manager Prime Therapeutics would be. My oncologist scheduled a peer-to-peer appeal – where their doctors hear out her arguments over the benefits of this drug – to take place while she was on vacation. For whatever reason, they couldn’t make the call and rescheduled it a week later.

I’m only a terminally ill patient who’s not on treatment. What’s another week’s wait?

That appeal was schedule for 11 a.m. yesterday. When the panel failed to make the call, my oncologist’s team went to work tracking them down. An hour later the benefits manager sent an email saying the appeal wouldn’t be heard. End of story.

Obviously I was frantic. Didn’t they know about this Right to Try law? Certainly my patient rights have been violated. I spent the next hour looking for news articles, testimony, anything I could find about it. Finally, I found the text of the law.  One, single page. I’ve never known a law to be written so succinctly.

When I read it I learned that it offers patients nothing, in fact it expressly states that it creates “no mandate or entitlement” for patients. The only thing it does is let drug companies off the hook should they agree to offer me the drug, it doesn’t work or I get some horrific side effects and want to sue.

This point was completely missed by the press coverage of the new law, which went to great lengths to talk to doctors who obviously don’t spend a lot of time with the “terminally ill”  but were more than willing to talk about how innocents like myself were now sure to be duped or misled by the holy grail of a treatment promise.

Even the law as it’s written seems to see those of us who are terminally ill as frail, bed-ridden, desperate folks looking for some Hail Mary pass that will buy us a few days or a month of life.

Sorry folks, that’s Hollywood, not life. Most of us live quite active, robust – even athletic lives. The way we extend those lives is a series of running plays – drugs that we’re guaranteed at some point will stop working, but that have added days, months, sometimes years to our life.

The more drug options we have to stave off our disease, the longer we have to live. And hopefully somewhere in that timeline a more effective treatment comes online.

In order for a Right to Try law to be effective, it needs to address all the players – the drug companies, the health insurance companies, doctors, hospitals, patients, caregivers and researchers.  And we need to see ourselves as part of a team whose goal is to create optimum health, quality of life and longevity.  We need to lose this “us against them” mentality where the patient seems to be the biggest loser.

There’s a lot of reason to hope with what’s going on in the world of cancer. But what’s the use of any of it if patients can’t take advantage of the progress being made?

 

 

 

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Nancyspoint reblog: Bending into the wind

I’m pleased to share the second #MetsMonday featured post. This one is from Liz Johnson, blogger at Breast Cancer Conscript. Liz was diagnosed with metastatic breast cancer in February 2015, less than four years after her initial stage 2 diagnosis. 904 more words

via “Bending Into the Wind” by Liz Johnson – A #MetsMonday Featured Post — Nancy’s Point

The math of life

While none of us can know how much longer we have to live, being diagnosed with an incurable cancer makes you start doing some math in your head.
In my case, estrogen-positive, bone mets only patients have a median lifespan of 8.6 months from diagnosis, at least according to the latest statistics. That means half of us die before reaching that number, and half of us live longer. It’s not an average, which would be near impossible to calculate. The National Institutes of Health barely counts those of us who have metastatic breast cancer. While we do know one of us dies every three minutes, we don’t know how long each one of us lived with disease before succumbing to it. We also don’t know the particulars, such as what stage they were when they were first diagnosed, the pathology of the cell or where the cancer lodged when it metastasized.
With Artificial Intelligence and machine learning getting into the game, we will soon be able to track that information and make a more reasonable guess. But for now, here’s the equation I’m toying with.
I have 8.6 years median survival. Research shows if I exercise, I can add 40% to that total. That gives me another 4.8 years. If I  develop a strong social support system and have adequate access to a medical team who can answer questions, add another 5 months.
So far I haven’t been able to find any research that shows that diet directly affects lifespan (if anyone knows of a study, please share).
Based on those calculations, I have a median survival of 13 years and 10 months. I’ve already survived 3 years and 2 months of that.
On the plus side, being treated at a research facility like Memorial Sloan Kettering gives me another edge. There’s a very strong chance that the cancer research facility will be host to a Phase 3 trial of the next viable, life-extending treatment, which I’ll be able to get into.
That cuts out the six months it will take the FDA to approve the drug once the trial is complete, the year it will take the pharmaceutical company to get it’s marketing pipeline up and running to offer the drug to the public and the six to eight months it will take ASCO to announce it as a standard-of-care treatment and for health insurance companies to agree to pay.
That means I’ve cut at least two years off the time it would take me to have access to the treatment in a community hospital setting.
It’s not a perfect science, nor is it a perfect equation. But until Big Data has a better answer for me, at least I have a benchmark.
And every day the finding of a new study is announced, giving me another chance to add more time onto the clock.
Einstein was right, space and time are relative. limited only by the speed of light. With strides being made at an exponential rate, cancer research may soon catch up to light speed. At that point, the impossible becomes possible.

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A river runs north

May 1 is a day of seduction.
Without fail, it arrives cloudless and sunny, warm and fragrant, casting off the vestiges of a cruel winter.  Fear? Toss it out the window. Success is an open road looking for someone to tear it up.

I remember feeling that way 10 years ago, before the Nishisakawick Creek coughed up its sedge to form an island where its mouth meets the Delaware River. Back then there were a few scant sycamore trees that jutted up from the river, catching dead leaves and twigs in the rapid flow. There were no signs that the island would one day block the creek’s entrance, forcing the river to flow up instead of down. Had I seen it, I tell myself, I would have known.

But the truth is, we never really know life’s irony until it stares back at us from the page. And this story is no different. May 1, 2008, I started out on a morning of hope, launching a new business with my mother and father as partners. Sure, we had failed as a family unit. They’d divorced some 30 years earlier. But we’d learned from our failures. Time is a great healer, afterall. We were no longer mother, father and child, but adults who had experience in the world. Our business venture was destined to succeed.

As I made my way down River Road that morning, fire police detoured traffic onto Dark Hollow Road where I’d normally turn anyway. A sign, I was sure, that I was on a guided path. “A tree down,” I thought before losing myself in other mind chatter.

My mother would arrive late, complaining about a power outage that kept her from drying her hair. We huddled, vowing to knuckle down, make calls, do whatever it took to make this venture work.

Uneven road ahead

Only now do I see the irony. Yes, a tree did come down, ill-timed, crushing my stepfather’s car and killing him instantly. Nine months later, my father would be diagnosed with lung cancer. Our fledgling business venture would be buried along with him. My sister’s crazy outburst at his funeral wasn’t inconsolable grief, but a softball-sized tumor lodged in her brain.

I’d pay only scant attention to the thickness I felt, like a jelly fish, in my right breast while showering at my father’s house after his death. “Perimenopause,” I thought, before my mind wandered to the mold in the grout lines and whether I could adequately clean them or would need a professional before I could put the house up for sale.

By then, a large tree trunk had lodged between the river sycamores and on a sun-baked August day if you looked real hard you could just about see the sedge that was starting to mound at their base, not even enough ground to stand on.

Running in place

The next May 1 I was in Jacksonville, Fla. helping my sister navigate a life, post-cancer, that had taken a chunk of her brain and part of her mind, leaving her at times manic and at times depressed. It would be another beautiful, cloudless day. She would come and watch me run a 9K race, sitting on a curb, throwing up in the gutter from the mega doses of steroids she was on to reduce the swelling caused by the brain radiation. My mother was there. A new venture. Not of our choosing. One that had us chaffing life’s bit.

By the next May 1st I was bald and scarred, recovering from chemo and surgery. It was cloudless and sunny and my neighbor would insist on me joining her for a long walk with her dog along the river. The river sycamores were getting thicker, their trunks bent over nearly parallel to the fast flowing river. A piece of opaque, ragged plastic got caught in one of them, rattling in the wind like a sail.

Rising from the ashes

The next May 1st, cloudless again, the plastic gone and with it wind from my own sails. I’d buried my sister nine months earlier and felt bewildered by the world I was now living in. By now, the sedge had settled, forming two islands just off the river banks. Enough ground to walk on with a sedge sandbar starting to fill in between the two shorelines where marshy grass grew. By summer, the marsh choked the creek flow, pushing the river northward along one of the islands.

I made friends with the kids who moved next door and we’d spend summers exploring the islands, looking for fossils, feathers and bones, making up stories about where they’d come from or how they’d landed there. Taking picnic lunches, throwing sticks for the dogs and swimming.

We built a bridge across the north flowing river so we could get to the island without getting our feet wet. Stone pile sculptures magically appeared, as did a stick hut where we could hide out from the strong, summer sun.

Finding a new flow

Three  more May 1sts passed, all cloudless, sunny and warm. My hair grew back, and so did the cancer. The new drugs I was on fought it back until the river flowed north again that summer. By then, people were finding their way to sedge island to fish, leaving trash and the rotting spoils of their catch. Scrubby shrubs filled in between the sycamores. The kids were now older and we stopped our treks to the island, except for the dogs who still liked to walk its perimeter while chasing sticks.

Last May 1st was dark and overcast, and yet my mood was buoyant. I’d just come home from a writing retreat with plans to sign up for summer triathlons, eat healthy and start writing projects anew. I’d moved my treatment from a community hospital to a research setting. The new regimen was working and my options for future treatments, endless. I’d weathered the emotional move from one oncologist to another.  The river flowed north, but I was used to it.

Defying logic

Here I am today, another May 1st. Sunny, cloudless, warm. Tonight I’ll go to dinner with my husband and my mother. We’ll talk about my stepfather, our losses and the ones we still have yet to endure. The sycamores on sedge island are now about 15-foot tall, standing nearly upright. A bore infected the aged ash trees along the river bank. Their rugged bark looks starkly naked against the backdrop of the maples now budding. On my way back from the river, I walked past  pear trees in bloom. The pleasant fragrance caught me off guard. My throat tightened and tears welled up.

Life has turned upside-down. An author whose book on resilience got me through my darkest hour is now under indictment for enslaving a woman and taking photos of her. His words which once soothed now ring hollow. My family as I knew it has gone. Others have abandoned me, replaced by new friendships with deeper roots.

Yesterday I ran a half marathon with my other sister, her husband and my husband. We went out for lunch afterwards and my niece and nephew fought over who would sit next to me. This summer, I’ll take them to sedge island. We’ll look for artifacts and make up stories and I’ll show them how, defying all logic, the river runs north, but still it flows.

 

 

This post is dedicated to Stephen R. Hance, 1948-2008, who believed in me always. Pictured here, with my late sister Tracy Johnson Pollick. They always remind me that no matter what direction life takes, go with it, because even when a river flows up, it will eventually find its way down.

 

 

 

 

 

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stage iv breast cancer

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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