Pre-ACA, Insured Face Exorbitant Costs.
With Accountable Care Act, People Will See Caps, Save $$

Vast numbers of Americans do not understand how the Affordable Care Act will make their expenditures for healthcare a heck of a lot more affordable. I am talking about the 80% of American voters who have insurance now, who misguidedly think it has them covered. Medical bankruptcies are up and they are happening to people like you and me because of unanticipated, unaffordable health expenses.

This week, I am sending money to a friend with breast cancer who has four children and insurance. Her friends are planning a fundraiser. She has had 6 surgeries and she can’t keep up.  She’s got breast care drugs that she cannot afford and no lifetime or yearly caps. I know someone else who delayed investigating a breast lump because she had to get herself insurance first. Now she’s stage IV and providers are after her daily for $$.

It’s not just cancer, although it is the first thing that often comes to mind. It’s mental health care that is not available for many Americans. It is what happens when someone suddenly has a debilitating stroke or progressive illness, or becomes disabled. Or drugs for HIV that suddenly become cut from the federal budget and thousands of HIV-positive Americans are without drugs. Annual and  lifetime caps, an end to pre-existing conditions, and insurance exchanges, and so much more,  have to be made plain to everyone.

It’s time to step up sharing specific examples of how people fare pre-ACA versus post-.  We need to move beyond generalities and intangibles to real-life hardships.  Social Security and Medicare, also faced early challenges and a skeptical public. I hope to share more stories here of real people who are going broke, barely staying alive because of current health policies. Many are insured, but can’t keep up.

If you are bored and feel like you have heard these vignettes many times before, make a contribution for the public good: try these real-life stories out on people who think catastrophic expenses could not happen to them. There are thousands more stories like this. Sadly, it is not unlike the AIDS Quilt.

We are in a precarious period. I urge you to get angry and seek out these stories. You won’t need to look too far. Get these stories around. RT them, tell them at parties. Let’s be sure the Affordable Care Act and all its essential public health infrastructure stand.

If you’ve got a story to tell, share it in the comments. If it’s too long, write me at “patientpov” at “gmail dot com.”

What’s Next for Prostate Cancer Screening and Treatment?

Complex medical stories require time and energy to tell, talk about, and think about. When stories involve yanking a test or practice that is widely used, all hell breaks lose. That’s why I am grateful to appear today on Alaska Public Radio Station KSKA, Anchorage, Alaska, on an hourlong Line One program on Prostate Cancer Screening and Treatment today. Thank you, Dr. Thad Woodard, the Line One host.

At issue, the latest US Preventive Services Task Force conclusion on the benefits and harms of prostate cancer screening:

“Prostate-specific-antigen-based screening results in small or no reduction in prostate-cancer-specific mortality and is associated with harms related to subsequent evaluation and treatments, some of which may be unnecessary.”.

What sounds like a seachange in practice merits some further analysis:

Did you know that PSA screening, defined as testing asymptomatic men with a PSA test, was adopted in the United States widely, and before it was tested in clinical trials? Screening recommendations for and against prostate cancer screening vary widely around the world.

From the late 1980s, PSA testing emerged and was presented as a wonderful new biomarker that could save men from dying of prostate cancer.

Soon, we saw a rising incidence of prostate cancer, detected by PSA. These men lived longer ostensibly with PSA-detected prostate cancer…but was it really clinically significant prostate cancer that would interfere with a  man’s life, kill him, or do we know enough?

Radical prostatectomies, minimally invasive prostatectomies (nerve-sparing, robotic) proliferated, as did similar trends in radiation therapy.

Eventually, news came out that maybe the treatments are worse than the disease. Quality of life outcomes pointed to impotence, urinary incontinence, and bowel problems.  The question also emerged  as to whether men’s lives were really extended.

Curiously, prostate cancer screening has not been embraced in many countries outside of the United States simply because the yield, number of lives saved is not viewed as compelling and the harms are substantial (overdiagnosis, overtreatment, impotence, urinary incontinence, bowel problems). Countries more committed to clinical trials did not recommend for prostate cancer screening.

In 2001, the UK, the ProtecT trial set out to evaluate the effectiveness of treatment for clinically localized prostate cancer, randomizing men to three treatments: active monitoring, radical prostatectomy, and radical radiotherapy.  This kind of trial could never have happened in the US, where treatment is embraced so strongly that it would be seen as unethical to randomize men to active monitoring (not watchful waiting, but much better- hence active). Interestingly, though, when ProtecT started, the investigators had trouble enrolling men because many men feared being randomized to one of the treatment arms and actually preferred active monitoring. Now that’s really different from what happens in the US.

Plenty of cultures wince at the thought of aggressive treatment for anything, be it cancer or other conditions. Readers might be interested in taking a look at the late Lynn Payer’s book, Medicine and CulturePayer’s work was eye-opening and might give patients confidence in trusting their point of view on how they want to work with physicians.

There is plenty of backstory to the way prostate cancer screening and treatment evolved in the United States. I hope to delve more into on the show tonight.

My own biases are closer to where the US Preventive Services Task Force is on screening.  But I’d like to hear from patients and men who have looked at the data.  I don’t think it is a black-and-white issue. Hoping you’ll tune in to hear me in less than an hour on Alaska Public Radio’s Line One. It will be streaming on your computer. (link is above). As always, I welcome your comments below.