[media-credit name=’Derek Montgomery’ align=’alignnone’ width=’648′]
[/media-credit]An angry crowd protested outside the University of Wisconsin Hospital and Clinic Wednesday to criticize the university’s decision to stop supporting research for two life-threatening diseases.
Restore ALS and MS Research, a patient advocacy group for Lou Gehrig’s disease and multiple sclerosis, held the protest to ask top UW administrators to reinstate Dr. Benjamin Brooks’ clinical-research rights and to reverse the decision to shut down the ALS and MS Clinical research center.
Protesters gathered outside the Health Sciences Learning Center to hear patients and their family members speak. Two women, Mary Campbell and Bonnie Schey, waved signs and directed people to the rally.
Schey said Brooks was, “The only neurologist in the area who knew so much.”
Having the support of Brooks and his team was “so important to patients and their families,” she added.
“His patients tended to live longer,” Campbell noted while her five-year-old son, Austin Robinson, held up a sign that read: “Life is supposed to be happy.”
“We’re here to stand up for those who can’t,” Campbell said.
Lisa Brunette, a spokeswoman for the UW Medical School, said Brooks’ clinical-research rights were reinstated in July.
“Dr. Brooks has not been prevented from seeing patients,” Brunette said. “His department chair did [previously] restrict his ability to apply for new research grants because there were some issues with patient care responsibilities, but those issues were addressed.” Brunette, who attended the rally, added since his rights were reinstated Brooks has not applied for any ALS research grants.
Protesters feel Wisconsin has lost its only major research and treatment facility for ALS and MS and believe the UW Medical School’s administrators have private companies competing with the lab for grant money. If successful, protesters say these companies could produce profitable patents from research, according to a release.
Brunette said the research program was suspended about a year ago because of problems with the operation of labs and over the safety of patients. UW Hospital set six criteria for Brooks and his team to meet, but Brunette said there has been no response from Brooks.
“The question is not so much why was [the program] closed as why hasn’t there been a response?” Brunette said. “It’s surprising and disappointing that there has been no response.”
ALS patient John Sandner addressed the crowd emotionally from his wheelchair.
“I’m confused and I’m angry,” he said. “Why would the university restrict the research?” He noted there are 200,000 MS patients in the United States and 30,000 ALS patients.
“Our little ALS group in Madison has lost three of its members in the last year,” Sandner said. “We’re down here dying while they’re up there playing politics.”
Another ALS patient, Judy Devereux, sat at the front of the crowd as her assistant read a speech Devereux prepared.
“I’m here to tell you that there is nothing temporary about the closure of Dr. Brooks’ lab,” Devereux said. “They have dismissed seven of the eight people who worked there, stripped Dr. Brooks of his research rights, taken away $700,000.00 of federally funded grant money, given away all of the equipment, asked everyone to remove all of their belongings and are now remodeling the space to be used for other purposes.”
She noted if UW Chancellor John Wiley will not hear the protesters’ appeals they will turn to the UW System Board of Regents.
Brunette defended UW’s position but noted people have every right to protest.
“We actually helped to prepare the rally because we think it’s important that patients be able to speak out,” she said. “We need to make sure that the services and labs meet standards, otherwise we’re not serving anyone. [The closing of the program] was done for the benefit and welfare of the patients, even if some of them don’t see it that way.”
Note: This article has been modified from its original form to reflect a correction to one of Mrs. Brunette’s quotes.
