The Affordable Care Act comes none too soon for some of these patients.
The Affordable Care Act comes none too soon for the more than half of ulcerative colitis and Crohn disease patients who are rejected for private health insurance coverage.
Persons living with inflammatory bowel disease (IBD) frequently have problems obtaining affordable insurance, among other financial hardships affecting their health and well-being, according to research presented at the 2013 Advances in Inflammatory Bowel Diseases, Crohns’ & Colitis Foundation Clinical & Research Conference.
Affected patients and families also face problems affording medications or specialist care, reports the new survey, the first of its kind to focus on the financial impact of IBD.
“Our findings show that people living with IBD have more trouble finding insurance, pay higher premiums, and are more likely to have trouble affording routine health and preventive care,” said David T. Rubin of The University of Chicago Medicine and co-chair of CCFA’s Professional Membership Committee.
To evaluate the insurance and financial consequences of IBD, Rubin and colleagues designed a new 76-item questionnaire, called the CCFA Access to Care Survey (ACS). The survey was completed by a nationwide sample of about 3800 IBD patients or parents of children with IBD.
The ACS was based in part on the CDC’s National Health Interview Survey (NHIS), an ongoing study monitoring the health of the US population. The researchers compared the ACS responses with publicly available data on responses to similar questions by 34,500 NHIS participants.
About 14% of ACS respondents said they had tried to buy private insurance within the past year, but more than half were rejected for insurance or paid higher premiums if they were accepted. By comparison, 8% of NHIS participants tried to buy private health insurance; only 8.5% were rejected and 14% reported paying higher premiums.
Half of ACS respondents said they sometimes could not afford their medications, compared with fewer than 9% of NHIS respondents. About one-third of patients and families affected by IBD were unable to see a medical specialist because of cost issues; about one-fourth were unable to make recommended follow-up visits.
ACS respondents also reported difficulties affording dental care (one-half) and vision care (about one-third). All of these problems were more common than for NHIS participants, suggesting that IBD carries financial hardships that may affect health in ways beyond the effects of the disease.
“Our study is the first assessment of the insurance and financial burdens facing IBD patients and families in the United States,” Rubin said. The results show that, as with other chronic health conditions, patients with IBD have difficulty obtaining health insurance and incur higher medical and related costs.
“Because they have a chronic, incurable disease, patients with IBD have all too often been considered uninsurable,” he said. The researchers hope the situation may improve with the introduction of the Affordable Care Act, under which no one can be turned down for insurance coverage because of a medical condition. “The impact on these findings by the Affordable Care Act and other novel initiatives by the CCFA will be critically important,” he said.