More than 100 Advocates Join With the Crohn's and Colitis Foundation of America to Advance Policies to Help Patients with IBD | Crohn’s & Colitis Foundation

More than 100 Advocates Join With the Crohn's and Colitis Foundation of America to Advance Policies to Help Patients with IBD

May 12, 2016

Honor Senate Minority Leader Harry Reid, Senator Chris Murphy, and Senator Bill Cassidy for their work supporting patients living with Crohn’s disease and ulcerative colitis as part of 14th annual IBD Day on the Hill

WASHINGTON, DC – More than 100 inflammatory bowel disease (IBD) patients and their loved ones from 19 states joined with the Crohn’s & Colitis Foundation of America (CCFA) today to meet with Members of Congress and implore them to help limit the cost of care for IBD patients by passing the Patients’ Access to Treatment Act (HR 1600). They also honored Senate Minority Leader Harry Reid (D-NV) with CCFA’s Lifetime Achievement Award and Senators Chris Murphy (D-CT) and  Bill Cassidy (R-LA) with CCFA’s Public Policy Leadership Award for their commitment to supporting patients living with these debilitating digestive diseases.

Advocates from California, Colorado, Connecticut, Florida, Georgia, Louisiana, Massachusetts, Maryland, Michigan, Minnesota, Missouri, North Carolina, New Jersey, New York, Ohio, Pennsylvania, Texas, Virginia, and Washington met with over 130 House and Senate offices today to urge them to support the Patients’ Access to Treatment Act. If passed, the Patients’ Access to Treatment Act would improve the lives of the 1.6 million Americans living with Crohn’s disease and ulcerative colitis by limiting  cost-sharing for complex and expensive medications.

“Living with a chronic disease like Crohn’s disease or ulcerative colitis is extremely costly. In fact, studies estimate that the total annual financial burden of Crohn’s disease and ulcerative colitis in the United States may exceed $31 billion when you factor in both direct and indirect costs to patients,” said Michael Osso, President & CEO of CCFA. “We need to be working to decrease the financial burden of these diseases, not increasing the cost to patients needing these specialty medications.”

Patients’ Access to Treatment Act

Many health insurance policies are moving critical medications, such as biologics, into "specialty tiers" that utilize high patient cost-sharing methods known as "co-insurance." This specialty tier, often the highest tier, now commonly requires patients to pay a percentage of the cost of medication - anywhere from 20 percent to 50 percent, which can often be hundreds or even thousands of dollars each month for a single medication - rather than a fixed co-payment amount.

The Patients' Access to Treatment Act, introduced by Congressman David McKinley (R-WV-1) and Congresswoman Lois Capps (D-CA-24), would enable patients to better afford the medications they need by imposing limits on cost-sharing in insurance plans.

It would restrict cost-sharing for specialty drugs, like biologics, to the level of cost-sharing for other non-preferred drugs. Insurers determine patient cost-sharing by listing drugs in specialty tiers, non-preferred tiers, preferred tiers, and generics tiers. Cost-sharing is highest for specialty drugs, and higher for non-preferred drugs than for generics or preferred drugs. 

“We thank Congressman McKinley and Congresswoman Capps for championing this important piece of legislation and urge Congress to take swift action and pass HR 1600. Doing so would help make living with Crohn’s disease, ulcerative colitis, and other debilitating chronic illnesses less burdensome and more affordable,” Osso said.

IBD Day on the Hill

Today’s legislative visits mark the culmination of CCFA’s 14th annual IBD Day on the Hill. In addition to meeting with legislators about the Patients’ Access to Care Act, advocates also asked legislators to join the Congressional Crohn’s & Colitis Caucus. Chaired by Congressman Ander Crenshaw (R-FL) and Congresswoman Nita Lowey (D-NY), the bipartisan Caucus was created in 2011 and works to raise awareness of IBD, support IBD medical research, and protect patient access to care. There are currently more than 71 caucus members from 26 states and the District of Columbia.


Crohn's & Colitis Foundation

The Crohn's & Colitis Foundation's mission is to cure Crohn's disease and ulcerative colitis, and to improve the quality of life of children and adults affected by these diseases. The Foundation ranks third among leading health non-profits in the percentage of expense devoted to research toward a cure, with more than 80 cents of every dollar the Foundation spends going to mission-critical programs. The Foundation consistently meets the standards of organizations that monitor charities, including the Better Business Bureau's Wise Giving Alliance ( and the American Institute of Philanthropy (

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