Public Policy activists converge on Capitol Hill.

More than 300 MS activists, pulled by the Society's annual Public Policy Conference, arrived in Washington, DC on April 29th to tell their elected federal officials about living with MS and the national policies that hurt or help them.

These volunteers are willing to deal with a political climate characterized by shrill Red/Blue divisions and to engage in our messy, often frustrating, democratic legislative process. Clear victories can vanish in the committee rooms where administrative rules are forged. Strong legislation can be watered down by amendments. What was defeated in April may re-emerge the following year. Yet our activists are determined to make the needs of people with MS understandable and compelling.

The North Carolina group at work

This reporter followed the group from North Carolina, representing Central North Carolina, Eastern North Carolina, and Mid Atlantic chapters. They were leadership volunteers, people with MS, caregivers, and chapter staff. Two of them, Don Burton, who volunteers as vice chair of the Central North Carolina board of trustees, and his wife Irene Burton, drew on their thirty years of living with MS.

Irene Burton was diagnosed in 1977 while she was in college. She worked as a computer specialist and Don went into marketing. Their son Chris was born in 1989 just as she began to use a cane. Today she uses a wheelchair and has retired due to fatigue and mobility issues.

"I've been lucky, having a caring husband and family and economic stability," Irene said. "But many aren't. So many people with MS are on their own and struggling. I'm challenged physically but I can speak up. It's what I can do." This was her third trip to Washington, and her second in tandem with Don.

"I'm helpless to change the course of the disease. Advocacy action allows me to do something positive," Don said.

Four major issues

The first two days of the three-day conference were packed with informational briefings on the issues that had been singled out for advocacy action.

* Amend the federal budget to increase funding for the National Institutes of Health (NIH) by 5%.

Major MS studies are underway at NIH. The 5% increase is just sufficient to keep up with inflation and ensure continuation of projects. "A decline in NIH funding endangers progress," Don Burton told his representatives.

[An amendment to add $7.1 billion passed the Senate but the House leadership offered a compromise of $4.1 billion. Negotiations will continue for additional money.]

* Pass The Stem Cell Research Enhancement Act of 2005.

Recent research has strengthened the hypothesis that stem cell research may lead to nerve repair and regrowth therapies--basic to curing MS. This bill permits use of donated cells currently stored in fertility clinics.

Irene Burton recalled being diagnosed with MS when no treatments were available. "I don't want to close doors that would help people," she said. She and Don strongly endorse this proposal.

[A vote on this bill is expected. Check our Web site for an update.]

* Eliminate Medicare's rehabilitation therapy benefit caps permanently.

During 2006, people with MS are exempt from the limits but if the law is not changed, caps return in 2007. Elaine Rohlik, a rehab professional in North Carolina, told her representatives, "The amount allowed covers about what you'd need for a sore neck. It isn't adequate for people with complicated conditions. Lack of therapy lands people in hospitals--at more expense to Medicare than adequate physical therapy."

[Watch for a call from the MS Action Network this fall, when the time is right to make a difference with legislators.]

* Stop the Health Insurance Marketplace Modernization and Affordability Act of 2005.

This bill eliminates key health insurance protections for everyone. Small businesses will pay higher insurance rates if they have employees who have chronic health problems. The impact on employment prospects for people with MS will be devastating.

[In May, this bill was killed! Advocates' visits and e-mails helped prevent passage of this unhealthy health-insurance law.]

Taking it to the Hill

On Tuesday, May 2, the North Carolinians split up for five House visits and rejoined to converge on their senators.

Senator Elizabeth Dole was unable to be present but her health-care liaison met the group.

Irene Burton spoke about her son, in college in North Carolina. He is now the same age she was when she was diagnosed. "If he were diagnosed today, it would be a different world for him," Irene said, citing the impact of MRI on diagnosis and the hope offered by the MS drags as benefits of research.

The aide pointed out that Senator Dole supported the senate budget amendment that would increase funding for the NIH.

However, her position on the current stem cell bill was not yet set. Jim Cantalupo said, "Please let Senator Dole know that we think it's a moral and ethical issue not to try this." Cantalupo serves as a member of both the National board and the Mid Atlantic Chapter board.

At the next meeting, Senator Richard Burr was aware of his visitors, concerns, but he was a co-sponsor of the health insurance legislation that the Society opposed. He said, "The reality is that entitlements will bankrupt us unless we're serious about redesigning the system."

However, the activists found the senator open to discussing stem cell research. Then, he surprised the group by agreeing that Medicare caps on rehab therapies should be eliminated.

Wrap up and begin again

Late Tuesday, the advocates assembled again to debrief. Some visits had ended in promises of follow-up, friendly laughter, handshakes. Irene Burton had given her personal phone number to several representatives with the promise to obtain any MS-related information they might need.

Jim Cantalupo noted, "You really do build a relationship. If nothing else, a legislator may be able to help someone back home in a small personal way."

For the Burtons, it was time to decompress, think about their long trip home, and make plans for the relentless ongoing work of promoting beneficial public policies. Irene was looking forward to going to North Carolina's Advocacy Day in June with their son Chris, who is studying public policy in college.

"Coming here a second time really helped me see how the legislative process works," Don said. "We don't always get an immediate response. That's why it's important to keep coming back to our legislators with a strong message."

Rochelle Kraut is associate editor of InsideMS.