Your stories matter. We are listening—and we’re getting those at the highest levels of government to listen, too.

Carole Moss has told her story many times: her 15-year-old son, Nile, died from MRSA, a preventable hospital-acquired infection, in an Orange County hospital nearly two years ago on Easter weekend. After being admitted to the hospital for an MRI, Nile began to develop flu-like symptoms and soon died from the infection.

On Monday, Carole told her story again, this time to a packed forum in Los Angeles hosted by Governor Schwarzenegger and President Obama’s White House staff. She also called on the Obama administration to do more to make hospital infection rates public, such as posting them on his health reform website. She also called for greater leadership from the government’s Centers for Disease Control and Prevention.

Carole wasn’t the only speaker demanding change. Reynaldo Hernandez shared his story with us and was also invited by the Governor to attend the forum. He said:

There’s something wrong here. I grew up in this country with a right to an education and the right to an attorney… why don’t I have a right to health care?

Carole and Reynaldo participated in the fifth of five Regional White House Forums on Health Reform. The forums allowed high ranking members of the Obama administration to hear from different stakeholders in the health care system – patients, doctors, administrators and policy makers. Other forums were held last month in Vermont, Iowa, North Carolina and Michigan.

Carole’s health care forum address was also picked up by the OC register blog.

In Nile’s memory, Carole founded Nile’s Project, a coalition to educate the public and stop unnecessary deaths from MRSA and other hospital acquired infections.

Carole was a driving force in the passage of “Nile’s Law,” which went into effect earlier this year and requires hospitals to report hospital-acquired infection rates and screen certain high-risk patients for MRSA. By 2011, Californians will be able to find infection rates on the health department’s website.

Any effort to reform our health care system must improve our standard of care for people like Carole and Reynaldo. Thank goodness they refuse to sit back and watch the system fail.

Several others working with Consumers Union attended the presidential health care forums, speaking from their own experiences. You can read more here.

And if you live in Rhode Island, Ohio, Missouri or Arkansas, you can attend an upcoming community health reform roundtable sponsored by your lawmakers. Go to to find out if one is happening in your area and for more information.