Aug. 01, 2014

Patient Advocacy Groups Addressing Care Barriers in Health Plans

For Immediate Release
July 28, 2014

Contact: Carl Schmid The AIDS Institute (202) 669-8267
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Group urges administration to address limited benefits, high cost sharing, and lack of plan transparency

Washington, DC (July 28, 2014)—Lupus Foundation of America, Indiana Chapter is one of 333 patient groups from around the country that have signed onto a letter to Secretary of Health and Human Services (HHS) Sylvia Mathews Burwell calling for immediate measures to reduce barriers to care for patients who have purchased policies through the Health Insurance Marketplace (the “exchanges”). The letter comes as some patients with chronic conditions have faced difficulty accessing crucial medications and other health services they need in some Qualified Health Plans, and as HHS is reviewing plans for 2015.

In the letter, the 333 signatories state, “We, the undersigned patient and community organizations representing millions of patients and their families, have been and continue to be committed to the successful implementation of the Affordable Care Act (ACA)…. We are encouraged by high enrollment numbers in the new Health Insurance Marketplace, and by early data showing low-income people who were previously uninsured are taking advantage of premium and cost-sharing assistance.”  However, they add, “At the same time, we are increasingly aware of evidence that new enrollees, especially those with chronic health conditions, are still facing barriers to care.”

Today’s letter to Secretary Burwell builds on the “I Am Essential” campaign that brought together hundreds of patient groups in a coalition that pressed for comprehensive coverage in the Essential Health Benefits. The coalition has been re-launched under the name “I Am (Still) Essential” to address ACA implementation issues and, as stated in its letter, to work with Secretary Burwell on efforts to revise the Essential Health Benefits for future plan years.

The coalition highlights three areas of concern with the Qualified Health Plans: limited benefits, high cost-sharing, and a lack of transparency and uniformity.

“Patients are grateful that the Affordable Care Act means they cannot be turned away from health coverage because of their medical conditions,” said Carl Schmid, Deputy Executive Director of The AIDS Institute. “But limited benefit coverage, cost-sharing for medications that can reach as high as 50%, and a lack of transparency in several plans mean many patients, particularly those with chronic or complexconditions, are not receiving the care and medications they need.”

Signatories of the “I Am (Still) Essential” letter include such leading national groups as The AIDS Institute, American Autoimmune Related Diseases Association, American Lung Association, Easter Seals, Epilepsy Foundation, the Leukemia & Lymphoma Society, Lupus Foundation of America, National Alliance on Mental Illness, National Kidney Foundation, Parkinson’s Action Network, and United Cerebral Palsy, as well as many other national patient organizations and state-based groups and chapters.

In the letter to HHS Secretary Burwell, the coalition asks HHS to enforce the ACA’s non-discrimination provisions, prohibit restrictive formularies and inadequate provider networks, address high cost-sharing, including inappropriate use of coinsurance, and improve plan transparency so that consumers can make informed decisions.

“The ACA was intended to provide quality, affordable health care to patients, but in the first year of implementation, many patients are still facing difficulties gaining access to medications and the specialists that they need,” said Angela Ostrom, Chief Operating Officer & Vice President Public Policy at the Epilepsy Foundation. “By joining together, we hope HHS will hear the patient community’s unified voice and address the need for reforms that ensure meaningful access to care.”

“When vulnerable patients, such as those with mental illness, are denied access to drug coverage, the consequences can be dire,” said Andrew Sperling, Director of Federal Legislative Advocacy at the National Alliance on Mental Illness. “We have outlined some necessary steps that will assure that all enrollees can obtain access to the medications, providers, and services they need to improve and maintain their quality of life, as intended by health reform, so the ACA can deliver on its promises for people with chronic health conditions.”

The full text of the letter to HHS Secretary Burwell along with the signatories can be found here.

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