Wednesday, October 28, 2009

Chat with White House Advisor Valerie Jarrett

You are invited to an online chat with White House Senior Advisor Valerie Jarrett to discuss how health insurance reform will impact minority communities and all Americans.

3:30 p.m. EST, Monday, November 2

Click here to submit your questions today.

Join on Monday at or at

Monday, October 26, 2009

In the News: Oregon Politician Lives with Multiple Sclerosis

Bill Bradbury isn't just running for Oregon governor. He's zipping — on a Segway.

Using the personal transporter is one way the Democratic politician deals with the effects of multiple sclerosis. He was diagnosed with the disease 30 years ago, but that hasn't stopped him from becoming one of the most exuberant and popular figures on Oregon's political scene.

Tall and lanky, he glides into campaign events on his electric standup vehicle, his booming laugh often heralding his arrival. The disease has affected his physical skills, he says, but not his mental abilities or his capacity to govern.

"I get energized by the challenge of this campaign," he says. "I really feel like the disability doesn't interfere with my ability to serve the people of this state."

The is an excerpt from an Associated Press article that ran in the New York Times on October 24. Read more here.

Tuesday, October 20, 2009

In the News: City Officials in Wheelchairs for a Day

As he approached the elevator doors in town hall, Edison Mayor Jun Choi swung his wheelchair around and backed his way in. From there, he pushed the metal wheels from the tax office to the clerk's desk, out the front door and over to the courtroom and police station.

Choi isn't disabled. Nor is Edison Police Chief Thomas Bryan. But the two rolled around town hall in manual wheelchairs yesterday to see how well the building is adapted to the handicapped. Following them in a motorized chair was Jackie Jackson, a South Plainfield disability activist who organizes the accessibility tours in conjunction with the Multiple Sclerosis Society.

This is an excerpt from an October 15 article in the New Jersey Star-Ledger. Read the full story.

Friday, October 16, 2009

Support Affordable Access to Prescription Medications

On Tuesday, Congressman Hank Johnson (GA-4) introduced a bill that improves prescription drug coverage, under both public (Medicare Part D) and private plans. The legislation is titled the Affordable Access to Prescription Medications Act of 2009 (H.R. 3799). This is companion legislation to S.1630 that was introduced by Senator Jay Rockefeller (D-WV).

People with multiple sclerosis could save thousands of dollars a year on their disease modifying therapies through this reform. The measure would cap monthly out-of-pocket costs for prescription drugs at $200 per prescription, or $500 per month for those taking more than one medication.

Take Action!
Click here to send a quick e-mail to your Representative asking them to co-sign H.R. 3799.

The Affordable Access to Prescription Medications Act of 2009 (S. 1630) was first introduced by Senator Rockefeller on August 6. This legislation serves to protect individuals from high out-of-pocket costs on prescription drugs.

People living with MS and other chronic diseases or disabilities can benefit from this bill by lowering their out-of-pocket costs. All public and private insurance plans, including Medicare Part D prescription drug plans, would be addressed in this legislation.

Tuesday, October 6, 2009

In the News: For Kilroy, MS Makes the Message Stronger

It was literally a pain in her neck that started Rep. Mary Jo Kilroy’s (D-Ohio) problems in 2003. Then the pain spread to her shoulder and her arm, and she became more and more worried about what was wrong.

“Oh, there were all kinds of theories, and I was one of those bad patients who used to, like, wake up in the middle of the night and worry about what it was and go on WebMD and get a diagnosis myself,” she recalled last week, laughing.

The problems accelerated until one night when Kilroy, a Franklin County commissioner at the time, was at a meeting of the Ohio Democratic Party analyzing voter turnout in the 2002 election. At some point she realized she couldn’t move her left arm, but she didn’t head to the emergency room until she had finished her meeting. The diagnosis was worse than the ones that she had found online: Kilroy had multiple sclerosis.

Six years later, Kilroy, now 60, is in her first term representing Columbus in the House. As the health care debate rages on, she has decided to use her personal story to help fellow lawmakers understand how important it is to make health care available for all Americans. In a “Dear Colleague” letter she sent last week, Kilroy told them about her own diagnosis.

“I was diagnosed with Multiple Sclerosis in 2003,” she wrote. “It is a serious disease, but I am lucky to have insurance that pays for most of the cost of the expensive drugs that slow its progression and help prevent disability.”

Though she announced her diagnosis in 2003, it warranted only a short article in her hometown paper and reassurances that she would run for re-election as a county commissioner. Her disease didn’t come up publicly during her failed run for Congress in 2006 or her successful run in 2008.

It is consequential, though: Multiple sclerosis is considered an autoimmune disease — in this case, when the body’s immune system attacks its central nervous system, according to the National Multiple Sclerosis Society. Kilroy has the most common form, relapsing-remitting MS, which is characterized by occasional flare-ups between periods of remission. With physical therapy and other treatment, Kilroy got the use of her arm back, and she said she soon realized there are “worse things” than MS. In fact, now she’s using her illness to try to shape legislation for those who might not have the same sort of coverage that she has.

Although Kilroy is apparently the only person diagnosed with MS to ever be elected to Congress, she is not the only Member to have experienced a serious illness. She’s also not the only Member to see her own illness as a way to advance an agenda.

Rep. Debbie Wasserman Schultz (D-Fla.), for instance, created a stir earlier this year when she announced she had been undergoing treatment for breast cancer. She was diagnosed in December 2007 but didn’t go public until March 2009.

“I just really wanted to deal with it privately,” she said, adding that she didn’t want to alarm her three young kids before she knew the cancer was behind her. “I didn’t want it to define me. I knew well-meaning people would make decisions on my behalf about what I was capable of doing.”

After she did go public, though, Wasserman Schultz quickly moved to use her experience to benefit others. On March 26, she introduced the Breast Cancer Education and Awareness Requires Learning Young Act, which would increase awareness of the ways that breast cancer can be detected early. Though she has been less vocal on the issue of health insurance coverage, she agrees with Kilroy that fighting against a serious disease at the same time that a patient is fighting for insurance coverage is too difficult. Both Democrats support the public insurance option.

One of Wasserman Schultz’s confidantes is another breast cancer survivor, Rep. Sue Myrick (R-N.C.), 68. Myrick was diagnosed with breast cancer in 1999, during her third term representing Charlotte in the House, and she went public immediately after surgery to remove the cancer. (Her five children were all adults, so she was less worried about their reaction than Wasserman Schultz was about her kids.)

Like Wasserman Schultz, Myrick became a champion for cancer-related causes: In 2000, she pushed through a bill that would allow women already diagnosed with cervical and breast cancer to receive the same pap smears and mammograms being offered to those who hadn’t yet been diagnosed, and she now serves as co-chairwoman of the House Cancer Caucus. In September, Myrick talked about her personal experience in her response to President Barack Obama’s radio address on health care.

“Nine years ago, I was diagnosed with breast cancer. I knew something was wrong with my body — but it took six doctors, three mammograms and one ultrasound before they found my cancer. The process took only a few weeks,” she said. “Under the government-run health care system they have in Canada and the United Kingdom, I wouldn’t have had the opportunity to get those tests so quickly.”

Myrick insists the health care system needs changes but opposes the public insurance option. In an interview last week, she said she would divide the massive health care bill into parts and focus first on the provisions that Democrats and Republicans can agree on, such as portability of insurance across state lines and between jobs.

Unlike Myrick, who sits on the influential Energy and Commerce Subcommittee on Health, Kilroy is a freshman Democrat not sitting on a committee handling the health care legislation. Her chances to shape the bill are limited, but she says she does talk to Speaker Nancy Pelosi (D-Calif.) about health care in her weekly meetings with freshmen.

Like Myrick and Wasserman Schultz, Kilroy carries with her the memories of constituents who have approached her to talk about their struggles with disease and insurance coverage. She encourages them to take up the fight for health care as well.

“I talk to them about how important it is for them to be engaged and involved in this fight for health care, to make sure that they let their Members of Congress — myself or Senators or others, the White House — know how important that this health care issue is for people like us,” she said.

Click here to view a video of Rep. Kilroy speaking on behalf of this issue.

This is an October 6 article in Roll Call written by Tricia Miller.

Walk MS Success in the National Capital Area

The National Capital Chapter involved MS activists in Walk MS and Bike MS events this year. About a month before the event, hand-written invitations were sent or delivered in person to all federal legislators, state Senators and Congressmen, and D.C. Councilmembers who served the areas in which the Walk MS events were taking place. Eight representatives attended Walk MS events, and an employee at one of the Councilmember’s offices organized a team.

Advocacy volunteers talked to Walk MS participants during registration and lunch, letting them know what was going on in that jurisdiction, getting them pumped up about advocacy, and signing them up to be an MS activist. Nearly 350 new activists signed up over the course of that weekend because of advocacy volunteers!