Reforming Health Care

Afraid you or your loved ones might someday face a government death panel? Forty percent of Americans still believe in it. Sixty percent think healthcare reform will create a government run health plan.  (Kaiser Family Foundation)

 I’m not an expert, but I know these are myths about healthcare reform. I joined about 100 others this week to hear Jonathan Gruber, one of its architects, explain the national healthcare reform legislation known as the Affordable Care Act (ACA). Gruber has recently published the comic book “HealthCare Reform: What it is, Why it’s Necessary, How it Works.”

Gruber said he decided to publish in this illustrated form after his 17-year-old son and his publisher persuaded him. “When you’re on a plane and they want to teach you what to do in case of accident, they hand you a graphic. I think it was the right call,” he said.

Few if any in this San Francisco audience needed to be convinced that reform is necessary. But questions remain about how it will work.  Economists like Gruber define the primary problem as the soaring rate of increase in healthcare expenditures. The Affordable Care Act includes policies to slow the growth of healthcare spending:

• fighting fraud
• $33.7 billion per year in combined federal and State funds is paid inappropriately through Medicaid (HHS)
• better coordination of care
• preventing disease and illness before they happen
• creating a new state-based insurance marketplace

About 72 percent of surveyed Americans know that subsidies will be available to help low and moderate income citizens purchase the (mandated) health insurance.

Yet even Gruber admits that “cost control is too hard for us to know what to do right now” because of both scientific and political realities.  To make progress toward true cost control the bill funds pilot projects and encourages studies such as head-to-head comparative effectiveness examinations of treatment options. In the semi-regulated world of free market pharmaceuticals, comparative effectiveness is rarely studied.

Gruber’s entertaining presentation lasted precisely one hour, including audience questions. For further information, he frequently referred the audience to the site of the Massachusetts health insurance exchange. His book refers readers to The Kaiser Family Foundation, Commonwealth Fund and US Department of Health and Human Services:  www.healthcare.gov.

Less radiation therapy for breast cancer in 2012?

A genetic test can help women with “stage zero” breast cancer avoid radiation therapy.

Some of the best news to come out of the San Antonio Breast Cancer Symposium earlier this month was this: researchers have validated an expanded use for the existing Oncotype Dx test.

The test was able to predict whether ductal carcinoma in situ – sometimes known as stage zero cancer  –  is likely to recur.  Since about half of recurrences are more serious,  most women are treated with radiation therapy.

DCIS - also known as stage zero breast cancer - represents an increasing share of new diagnoses.The test "could help doctors better judge which women diagnosed with DCIS are at high risk for recurrence or an invasive breast cancer diagnosis in the future and would benefit from radiation therapy after surgery," according to breastcancer.org .

The test may be available to doctors as early as next week.

"Using a molecular-based assay, we have successfully identified patients at higher risk for recurrence and patients at lower risk," said Principal Investigator Lawrence J. Solin, MD, of Albert Einstein Medical Center in Philadelphia. This is an important advance for women with newly diagnosed DCIS. By predicting individual risk, physicians can provide a more tailored treatment program for each patient."

See my picks for top cancer stories of 2011

Open Letter to My Friend Who Was Recently Diagnosed with Cancer

Dear Jane

I'm so sorry to hear you were diagnosed with breast cancer. You've joined that club that keeps growing too fast! Help is available, including but not limited to the following:

Information

Some people try to become cancer experts when they get a diagnosis; some prefer to have only actionable information. But everybody has to make treatment decisions. If you’re like most people you will rely on the strength of evidence, modified by your own beliefs and flavored by the way in which the information is conveyed.

I know you're able to understand complex data but please be gentle with yourself if the stress of the diagnosis temporarily affects your ability to think clearly. I'd be happy to help research your options or even just listen to you think out loud about them.

The National Comprehensive Cancer Network publishes its clinical practice guidelines online; an excellent place to start. For less technical info, breastcancer.org and Association of Cancer Online Resources have moderated online communities where patients share their experiences.

Emotional Support

Your friends want to – and can – help somehow or other. The same goes for your family, colleagues, neighbors, faith community, social network and the other people at the dog park. But it's your choice how many people you share your story with.  

I know you want to keep a low profile for now, and I respect that. Consider picking a liaison who can help control the flow of information, casseroles and teddy bears. She can send updates to an email list, or call just the friends you've directed her to.

The most important thing is that you do not have to worry about anybody else's feelings right now. It's all about you!

 Practical Support

It’s just so inconvenient to have cancer ;) There’s no therapeutic benefit for “toughing it out,” minimizing the discomfort or ignoring your daily needs. Help is available, sometimes from surprising places: for example, the “Road to Recovery” program can drive you to treatment and back.

Keeping track of the insurance and financial data is necessary but can be a burden. You might ask a trusted friend for help. The American Society of Clinical Oncology offers suggestions about how to track both your clinical and medical insurance records.

Treatment means teaming up with a group of providers, and they’re human so mistakes can happen. The federal Agency for Healthcare Research and Quality has advice about the best ways to communicate with your healthcare providers. Taking along someone who can take notes and ask questions during appointments can help protect you from bad outcomes. 

Both research and personal experience have taught me what it means to get the right help in the right way at the right time. Wishing you that kind of help, plus health and long life,

 - Eve

Exploring How We Use the Internet for Health Research

I don't have much commentary to add because:

•     I have confidence in this source
•     the format is pretty easy to understand

So take a look at the Path of the Blue Eye's infographic about "epatients" and tell me what you think!