With the woefully inadequate care that some nursing homes have provided to Huntington’s disease patients, a number of HD families have fought hard to create alternatives.
Few embody the fight for quality care better than Raima and Mike Fernald of Saco, Maine. They have twice advocated for bills in their state legislature to improve the predicament of Raima’s two HD-stricken sons, John Irving III and Chris Irving, fathered by her first, HD-affected husband, John Irving, Jr.
Both sons died in Raima’s arms – Chris in March 2012 at 37 and John last month at 39 – after a long and painful struggle by the Fernalds to overcome bureaucratic inertia and bring them to the couple’s home in Saco, a coastal town south of Portland.
“That was my whole goal, having them come home,” said Raima, 55, whom I interviewed at length twice last week. “I did not want them to die in a strange place or different place. Their father died in a hospital. Nobody really knew where he was. I found out only a few days after he died because a newspaper reporter was doing an article and was compelled to find me.He died alone and I could not let that happen to my boys.”
Though HD dramatically shortened their lives, John and Chris helped establish an important legislative legacy in Maine.
In 2007, together with other advocates, the Fernalds successfully pushed for passage of An Act To Prevent Inappropriate Transfers of Residents of Nursing Facilities.
Even as they mourn their double loss, the Fernalds are now advocating for a pending bill, LD 488, An Act to Improve Access to Home-based and Community-based Care in the MaineCare Program. (MaineCare is the state’s Medicaid program.)
“We’re very supportive of the bill,” said Louise Vetter, the CEO of the Huntington’s Disease Society of America, noting that the society reviewed the legislation “to make sure it was strong” and “doesn’t have loopholes that could negatively affect families down the line.”
According to Vetter, LD 488 is the “best current example” of advocacy to facilitate home-based care for HD patients. The bill is “unique in terms of the issues and the involvement of the Maine Affiliate” of HDSA.
“There is evidence that home-based care is more efficient in overall cost savings and effective quality of life,” Vetter noted.
However, she added that the country is currently in a “wait and see” mode about the future of home-based care because the Patient Protection and Affordable Care Act (Obamacare) has yet to take full effect. The act supports home-based care, but lacks clarity on implementation, which will take place at the state level, she said.
Source: At Risk for Huntington’s Disease