Tag Archive for Health care

And the cancer patient learning process continues

About 10 days ago, with the agreement of my doctors here in town and the begrudging acceptance of my NYC oncologist, I decided that I am no longer strong enough for chemo and have chosen best supportive care, pain management and to begin interviews with hospice. The learning experience that has followed making that decision has, I confess, thrown me for a loop.

There are some – friends, family, other patients – who have asked me if it’s too soon, if I was just feeling depressed at my slow recovery from the blocked kidney and nephrostomy tube placement. Now, 10 days after making the decision, I can say maybe. But I do know that my decision to stop chemo was the right one, and as Dr. Personality so directly pointed out, as soon as I stop chemo, the tumors will grow and my pain will increase. I know that without the kidney issues, I might have several months left – but kidney blockages added to the mix are game-changers that mean I’m at much higher risk and could deteriorate much faster with less notice.

What I wasn’t prepared for at this point in my dance with cancer is to get the impression from the hospice facility I’d very carefully researched that I’m not quite sick enough. Why? Because I don’t fit their patient profile of someone who is within days or hours of end-of-life.

Although this is a well-respected, carefully chosen local facility, they apparently prefer to concentrate on patients who are in immediate danger of dying, rather than patients who know they are out of options and want to live out their days surrounded by responsible health care and professional caregivers.

If I wanted to die in my living room and had family and friends to take care of me 24/7, I’d have fit their more popular model of caregiving. But if I want 24/7 care provided by a facility, and I’m not due to die within a couple of days, it looks like I will have to consider extended care, nursing home type facilities. Not what I wanted. Not what I planned for. It doesn’t matter that I have good insurance and private money.

But apparently, depending on the services provided by hospice groups in your location, dying with dignity isn’t about what you prefer as much as it is about what hospice prefers to provide.

And the learning experience continues.

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March madness – and shining moments

Capitol Building Washington DC
Image by WoofTeacher via Flickr

March.
Colorectal cancer awareness month.
NCAA basketball tournaments.
And health care reform legislation.
These are a few of the mad and shining moments in my life right now.

I’ve been away from the blog because I’ve been *living* my life out loud, and it’s been a heckuva time these last 10 days.

First things first – I am pretty sure that some of the point guards on the SU basketball team could hit a three-point shot from Syracuse TO Salt Lake City. But I’m really glad they’ll actually be IN Salt Lake before they have to try. And I’m really glad Cornell will be playing it’s berth in the Sweet 16 right here at home in central NY, in the Carrier Dome.
But enough of that madness. ;)

I spent last week in DC, lobbying with the Colorectal Cancer Coalition (C3) for representatives to co-sponsor and senators to support with a Senate version Texas Republican Kay Granger’s H.R. 1189 and Oklahoma Democrat Dan Boren’s H.R. 1330. These bills will (respectively) increase access to colorectal cancer screening and treatment, and close loopholes that permit private and group insurers to deny coverage for colonoscopies. We were also asking for an increase in funding for fiscal year 2011 for the Department of Defense’s Peer Reviewed Cancer Research Program, which this year began to fund colorectal cancer research. Learning how to lobby, how to make your voice as effective as possible was an intense experience I hope to repeat next year – but more about that in another post.

And then yesterday, the U.S. House of Representatives stepped up and passed legislation which, after reconciliation with the Senate bill passed in December, 2009, will make health care reform a reality in the U.S. This is the take on that vote, from the Drug Industry Association Daily Briefing:

House Passes Healthcare Reform Measure By 219-212 Tally.
In what media reports and analyses are casting as a historic development and a major win for President Obama, the House Sunday night passed the Senate-approved healthcare reform measure by 219-212. The AP (3/22) notes that after passing the bill, the House proceeded to approve “key changes” to it, “part of a prearranged agreement to guarantee passage of the historic legislation. The changes passed by a 220-211 vote. That bill now goes to the Senate for final approval, where it only requires a simple majority to pass.”
Most stories are describing the bill in largely favorable terms — and the vote as a triumph of the political system as a whole. The vote, reports USA Today (3/22, Wolf, Fritze), “assured that about 32 million Americans will gain health insurance coverage, and millions more will win protections against losing theirs.” The Los Angeles Times (3/22, Levey, Hook, Silva, Muskal) reports that “House Democratic leaders proved they could hold the majority caucus together,” though “thirty-four Democrats opposed the bill, as did all Republicans.” An AP (3/22, Woodward) story observes, “Rarely does the government, that big, clumsy, poorly regarded oaf, pull off anything short of war that touches all lives with one act, one stroke of a president’s pen. Such a moment has come.”
It was, Bloomberg News (3/22, Litvan, Rowley, Jensen) notes, “the most sweeping US healthcare legislation in four decades,” and “the biggest victory yet for…Obama.”
The Los Angeles Times (3/22, Nicholas) reports, “Rarely does a president bet everything on a single card, but…Obama did it on healthcare,” and “what became clear in the…debate is that Obama is a president with a combative stubbornness, one that was not often visible in his cool, above-the-fray public demeanor.”
In a front-page story, the New York Times (3/22, A1, Bernard) reports, “The uninsured are clearly the biggest beneficiaries of the legislation, which would extend the healthcare safety net for the lowest-income Americans.” Meanwhile, “for people already covered by a large employer — most Americans, in other words — the effect would not be as significant. And yet, just about everyone might benefit from tighter insurance regulations.” The Times adds, “There is no question that the legislation should benefit consumers in various ways.” In a separate front-page story, the New York Times (3/22, A1, Pear, Herszenhorn) notes that “Democrats hailed the vote as historic, comparable to the establishment of Medicare and Social Security and a long overdue step forward in social justice.”
McClatchy (3/22, Doyle) reports that “Pelosi has already made the history books, and now she’s written a new chapter in wielding power.” The vote, says The Hill (3/22, Cusack), “showed…why she is one of the most powerful Speakers in history.” Pelosi “achieved what some thought what was impossible after Scott Brown’s victory in Massachusetts two months ago.”
McClatchy (3/22, Lightman, Douglas) reports that “within a year, insurers” will “be barred from denying coverage to children because of pre-existing conditions, imposing lifetime limits on coverage and dropping people from coverage when they get sick.” The bill also “provides more help with insurance premiums for lower- and middle-income consumers and expands Medicaid funding to states.” Politico (3/22, O’Connor) reports that it was “a legislative landmark Sunday night that has eluded generations of lawmakers” — one that provides a “climatic finale to a yearlong saga that has taken its toll on the president and his party” while securing “a historic win for Obama while providing his party with some much-needed momentum after a long, grueling slog.” The Washington Times (3/22, Haberkorn) also notes that “Democrats hailed the vote as one of the most significant change[s] in American social policy since the creation of Medicare in 1965 or Social Security in 1935.”

I’ve really been enjoying this heckuva ride, this display of shining moments (what did G.W. Bush Sr. call them? oh yeah, some crazy million points of light!) that we’ve lit up in the sky this March. Let’s keep ‘em coming, America.

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Cancer screening guidelines: What cost prevention?

337/365: The Big Money

Image by DavidDMuir via Flickr

The cancer survivors world has been twisting around on itself this week, as new screening recommendations were released for breast cancer (no need for annual mammograms until age 50, breast self-exams ineffective, screenings from age 40-49 yield too many false positives) and cervical cancer (moving Pap smears out to every two years, or every three years, depending on health and history.)

I’m not sure how I feel about the science behind these recommendations. I’m all about science – but I’m also all about prevention in health care, and body-awareness as a patient. I have a tough time wrapping my head around the idea that in the two areas where we’ve made the most progress at getting the public to embrace self-exams and insurance companies to embrace preventative screenings, none of that prevention has done enough good to merit continuing the practices. I’m from the era of ‘Our Bodies, Our Selves’ and I’ve done breast self-exams (BSEs) for 35+ years. Now I’m hearing that none of that was (necessarily) worth my time. Huh?

Recently, in her blog Everything Changes, Kairol Rosenthal asked, “Do you think we can move beyond anecdotal stories about young women with breast cancer and start investing in evidence based studies about how to reduce our mortality rates?

I think we can – I think we must. And this is how I responded.

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Yes – and this needs to happen not just for breast cancer, or cervical cancer (which took a screening recommendation hit today, too) but for ALL cancers.

We not only CAN move research beyond anecdotal stories about detection and diagnosis – we MUST move to accomplish that research.

I agree that decisions are based on (mostly) facts and science and research. And I submit, with all due respect to the learned members of the USPSTF, that it’s entirely possible that while their research is adequate on its face for the question(s) they considered, they asked the WRONG questions.

The questions are not only whether early screenings prevent death, or even whether they cause harm. Those are important questions, but not the only questions that need to be asked. Researchers need to ask whether early screening actually discovers disease in a lower, more easily treatable stage than screenings at a later age. They need to ask if that number is rising (in several cancers, it is.) They need to ask whether early, non-invasive screenings like BSE, mammograms, and other self-exams, can contribute to a heightened body-awareness that helps people become better and more active, informed participants in their health care. They need to ask if it’s more cost-effective to provide preventative care to the largest population possible or more cost-effective to stick with the current model (spending hundreds of thousands of dollars to fight fires that could have been prevented at lower cost.)

We are mired deep in a US healthcare system which spends exponentially more money on treatments (putting out fires) than it spends on preventing those fires in the first place, than it spends on making routine well-person checks available and affordable. The causes of readily available screening and early detection for any cancer are very close to my heart – as well as other areas of my anatomy.

I was considered high-risk for breast cancer (paternal aunt and 3 of her 4 daughters dx’d with BC before age 40; one cousin dead of recurrent BC by age 50; one of her 4 daughters a prophylactic mastectomy patient.) I was considered high-risk for cervical cancer after an HPV exposure in my late 30s. I was aggressively screened for both BC and cervical cancer – who knew the cancer card I’d draw would be stage IV rectal cancer diagnosis at age 48, two years before the recommended screening age and with a less than 15% 5-yr survival rate?

Preventable, treatable and beatable in the context of five chemo regimens, three surgeries and 5+ years fighting for my life is relevant only in the context of what SHOULD have been done! CRC ain’t so treatable, preventable or beatable when your doc finds an 80% tumor load in your liver.

I’m an anecdote, all right, but I’m an anecdote who’s paid attention to all of the facts and figures. My treatments and surgeries to date have cost over $300K, compared to what it would have cost to give me annual screening colonoscopies from age 40 – $8K, at today’s prices. That’s pretty simple math to do, and to factor by the number of late-stage (III, IV) patients diagnosed with CRC this year. As with breast cancer, THAT is the math that needs to be done. We need to ask THOSE questions about early screening.

And until we have the answers to those un-asked questions about the success of prevention, then I’d much rather deal with a false positive and a biopsy that turns out to be negative. It would be infinitely preferable to the treatment required after late detection of an advanced cancer.

Been there, done that, have the ostomy supplies to prove it. ;)

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The new science is interesting, and I am slowly reading through it. But I think that I’ll be continuing my current screening procedures, based on my personal experience, and I’ll continue to advocate for early detection, prevention and body self-awareness.

And if you’re not reading “Everything Changes,” do check out Kairol’s blog.

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