Be brave anyway: Marcelas and Tiffany Owens and the Patient Protection and Affordable Care Act

Here's what I imagine the late Tiffany Owens would say today to her 11-year-old son Marcelas, who was beside Pres. Obama at the signing of the healthcare reform bill:

To my beautiful young man Marcelas,

I'm so proud of you! Thank you so much for being brave in speaking for me to all those important men and women. I wish I could be with you.

A lot of people have been yelling at you on TV and blogs. Try not to let that bother you. When you stand up for something you believe in like you've been doing, people on the other side can get mad, especially if you're effective. Maybe, like they say, I could have done things that might have prevented my health from getting so bad, but maybe not. I don't know enough about pulmonary hypertension to know. I'm not sure anyone does. And that misses the point, anyway. The point is that sick people should still be able to be taken care of by doctors and nurses, even if they lost their job, and don't have health insurance anymore. That's what you told all those people, and that's exactly what I wanted you to tell them.

People won't always listen to you as much as they did about this. But you should still speak your mind, with respect. And, of course, you may well never get to the White House again! Don't expect that you'll always be rewarded for being brave – but be brave anyway.

There are lots of people here with stories like mine – 45,000 every year, who died because they didn't have health insurance. You helped to speak for them, too. And you helped to save the lives of lots of people like them, from now on, because of the new law.

I miss you so much, Marcelas! Give a big hug to your Grandma, and do what she tells you.

Much love,

Your mother

Advice: Remember Tiffany Owens.

Read another story.

While she lay in bed: Insurance denials for pre-existing conditions

"My mother died very suddenly and very young," her adult son told AARP Bulletin last fall.

Ann Dunham died in 1995 at age 52 after working as a consultant for the U.S. Agency for International Development, the Ford Foundation and Women's World Banking. She taught her son an important lesson about access to health care. "She'd go from contract to contract and would be able to buy health insurance [only] when she got a new contract," her son said. "When she got sick, she had just signed up for a new job, a new contract, and she had a lot of arguments of whether this was a pre-existing condition of which she had no knowledge whatsoever….As someone who watched my mother argue with insurance companies while she lay in bed dying of cancer, I will make sure those companies stop discriminating against those who are sick and who need care the most."

This is more than wishful thinking on the son's part, as he is now president of the United States – Barack Obama. As he said frequently during the presidential campaign, "These are not abstractions for me."

Advice: Fight for health insurance for all.

Read a story about a pre-existing condition.

Thanks to Jim Toedtman for the source article in the March issue of the AARP Bulletin.

Patients’ Bill of Rights

In November 1997, President Clinton's Advisory Commission on Consumer Protection and Quality on the Health Care Industry, in an Interim Report, issued the Patients' Bill of Rights and Responsibilities. Donna E. Shalala and Alexis M. Herman co-chaired the 34-member Commission.

The Patients' Bill of Rights and Responsibilities has three goals: to strengthen consumer confidence that the health care system is fair and responsive to consumer needs; to reaffirm the importance of a strong relationship between patients and their health care providers; and to reaffirm the critical role consumers play in safeguarding their own health. The Commission articulated seven sets of rights and one set of responsibilities:

The Right to Information. Patients have the right to receive accurate, easily understood information to assist them in making informed decisions about their health plans, facilities and professionals.

The Right to Choose. Patients have the right to a choice of health care providers that is sufficient to assure access to appropriate high-quality health care including giving women access to qualified specialists such as obstetrician-gynecologists and giving patients with serious medical conditions and chronic illnesses access to specialists.

Access to Emergency Services. Patients have the right to access emergency health services when and where the need arises. Health plans should provide payment when a patient presents himself/herself to any emergency department with acute symptoms of sufficient severity "including severe pain" that a "prudent layperson" could reasonably expect the absence of medical attention to result in placing that consumer's health in serious jeopardy, serious impairment to bodily functions, or serious dysfunction of any bodily organ or part.

Being a Full Partner in Health Care Decisions. Patients have the right to fully participate in all decisions related to their health care. Consumers who are unable to fully participate in treatment decisions have the right to be represented by parents, guardians, family members, or other conservators. Additionally, provider contracts should not contain any so-called "gag clauses" that restrict health professionals' ability to discuss and advise patients on medically necessary treatment options.

Care Without Discrimination. Patients have the right to considerate, respectful care from all members of the health care industry at all times and under all circumstances. Patients must not be discriminated against in the marketing or enrollment or in the provision of health care services, consistent with the benefits covered in their policy and/or as required by law, based on race, ethnicity, national origin, religion, sex, age, current or anticipated mental or physical disability, sexual orientation, genetic information, or source of payment.

The Right to Privacy. Patients have the right to communicate with health care providers in confidence and to have the confidentiality of their individually-identifiable health care information protected. Patients also have the right to review and copy their own medical records and request amendments to their records.

The Right to Speedy Complaint Resolution. Patients have the right to a fair and efficient process for resolving differences with their health plans, health care providers, and the institutions that serve them, including a rigorous system of internal review and an independent system of external review.

Taking on New Responsibilities. In a health care system that affords patients rights and protections, patients must also take greater responsibility for maintaining good health.

Advice: Know your rights, and use them.

Read one of our access stories, or read more from the government source on your specific Medicaid and Medicare rights.