The Startup at Rockford Illinois

When people in the small US manufacturing city of Rockford, Illinois began discussing what help they most needed in dealing with Huntington’s disease, a few themes became obvious. Even though social services were available, it wasn’t always easy to access them. Also, there was a desperate need for a local medical specialist. It was just too difficult to regularly drive an hour and a half to the nearest HD treatment center at Rush University Medical Center in Chicago. Faced with this journey, some local people just weren’t being treated at all.

The solution turned out to be building community expertise in HD. Members of the Rockford support group of the Illinois chapter of the Huntington’s Disease Society of America, in partnership with the local medical college, found a doctor who could provide essential medical services nearby. They also recruited a part-time social worker devoted exclusively to the needs of HD families. Soon, with financial support from Enroll-HD, the group plans to add a telemedicine service that will make it possible for people in Rockford to consult with a movement disorders specialist without leaving town. The result is an innovative combination of community-based support and expert world-class care, plus a connection, through Enroll-HD, to a global network. “We need to give better care and greater assistance at the local level to families dealing with HD,” says support group member Ted Ross, who led the effort. “Enroll-HD is helping.”

Although the number of people affected by HD in Rockford is relatively small, the strength of the local network makes the city a natural study site for Enroll-HD. Rockford’s first participant was registered at the end of 2012. “If we help families with the many issues they deal with, there will be greater participation in clinical trials,” says Ross. “In the future, we’ll have the proof of this here.”

Bringing the doctor to town

At first, the Rockford group explored the idea of bringing a doctor who specializes in movement disorders to the city, but the logistics and the cost were overwhelming, says Ross. There just weren’t enough patients to keep a specialty clinic afloat. So Ross approached a local institution, the University of Illinois College of Medicine at Rockford, where he was introduced to Mitchell King, MD. King is a general practitioner and did not have specific expertise in HD, but since part of the medical college’s mandate is to address local medical needs he began working on ways to help. “As we learned more and more, it was clear there was a need,” says King. “The HD population in Rockford will sometimes not seek care, because there are no movement disorder specialists in the community, and travel is a major obstacle.”

The result: an innovative combination of community-based support and expert world-class care.

One idea was telemedicine, a system that could allow people in the area to consult with an expert in Chicago via a high-definition video link. It is powerful enough to allow the doctor and patient to see each other clearly and have a face-to-face conversation. It’s a bit like a souped-up version of Skype, explains King. “It’s higher-resolution, so patients can actually be examined,” he says. “A lot of the physical exam in HD is observational— you have to be able to observe movements, and talk.” If the HD group in Rockford couldn’t bring an expert to the city in the flesh, this virtual visit seemed like the next best option. The challenge was finding a way to pay for this technology.

Making the local link

Meanwhile, Ross and his collaborators were developing additional resources. In October 2009, the college of medicine hired social worker/ counselor Sadie Foster, MA part-time to specialize in HD. She now makes regular home visits with about 10 families, helping them tackle logistical issues such as life insurance, home health care and disability, and cope with day-to-day problems like personal conflicts, diet and medication. Because HD affects the whole family, visiting people at home is crucial, she says. “You get to know the other family members, and they know you’re available if someone else should develop the disease, or if a child has a question,” she says. “You become part of their world.”

Because HD affects the whole family, visiting people at home is crucial, says Sadie Foster.

In addition to her direct work with those families, Foster hosts a monthly call-in support group discussing HD-specific issues. Callers can ask questions anonymously via email or over the phone—an alternative for people who can’t or don’t want to go to a public support group.

King also now sees a few HD patients regularly at his practice, providing primary care and making referrals to neurologists and other specialists. The idea is that once the telemedicine component is underway, patients will see him for their basic needs, and from his office consult remotely with an HD specialist.

What Enroll-HD can offer

The Rockford group recently formed a nonprofit organization, Huntington’s Disease Rockford Support Inc., to raise money in the community to improve the quality of care over the long haul. With those funds and revenue generated from participating in Enroll-HD they hope to expand in-home social work services and make remote video link consults available some time this year. Ross also plans to export this micro-network approach to other parts of Illinois and beyond.

King and Ross expect that as many as 50 people may participate in Enroll-HD from the region. People don’t have to enroll in the study to be King’s patients, and people who aren’t his patients can get involved in the study. But the two projects reinforce each other. On the one hand, people in Rockford now have more resources and more options that don’t require leaving town. They will be seen regularly by medical professionals who know about HD. On the other, the strong network and improved services in the community have built local interest in Enroll-HD. This kind of mutual support is what will ultimately attract people to the study, says Ross: “If we’re going to make Enroll-HD successful, that’s just going to be required.”

This story was originally published in the February 2013 issue of Enroll!