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6.9.16 Kidney patient John Carter, a former athlete and state corrections officer who now needs dialysis treatment to survive, recently took a stand against a draft rule in Idaho that would make it difficult if not impossible for chronic illness patients to receive financial aid from nonprofit assistance programs. “No dialysis would be death,” said Carter, who receives help from American Kidney Fund to pay his $300 insurance premium. “Stopping those payments would make my out-of-pocket costs astronomical.” Whether covering co-pays and medications for cancer patients or helping with insurance premiums for those on kidney dialysis, financial assistance programs, and help finding them, are increasingly important for patients with chronic diseases. They could now only become more important in Idaho. Idaho’s rule, Draft Bulletin 16-04, remains a proposal. But if made permanent, patients would likely have to file complaints with the state if their premium assistance payments are rejected or questioned by insurance companies – forcing them to navigate another complex process on top of the financial and health care stress they already have to deal with. Carter isn’t new to patient advocacy, having traveled to Washington, D.C., previously to protect Medicare funding for dialysis treatment and funding for anti-rejection kidney medicines, according to the Idaho Press-Tribune. But hundreds if not thousands of Idaho residents are now standing beside him in protest of the Idaho Department of Insurance's Draft Bulletin 16-04. The Chronic Disease Coalition was among those advocating on behalf of people living with chronic illnesses – including so many who have trouble paying for all of their out-of-pocket health expenses such as insurance premiums and co-pays. We joined the Idaho Parkinson’s Action Network, GBS/CIDP (Guillain-Barre syndrome/chronic inflammatory demyelinating polyneuropathy) International and the Lupus Foundation of America in sending a letter to the state agency outlining our concerns. Here’s an excerpt:

Third party premium assistance is an essential tool by which hundreds of chronic disease patients in Idaho secure adequate health coverage and treatment. These programs have operated in Idaho and across the nation for decades, and have provided aid to countless patients who otherwise lack sufficient financial resources to pay their share of premiums toward medical treatment(s) or prescription coverage. Thanks to the efforts of charitable assistance programs, patient access to treatment and quality of life have been greatly enhanced. In many instances, third party premium assistance has spared chronic disease patients the burden of having to choose between medical treatment and necessities like food or rent.

Given the centrality of these programs to chronic disease care today, we are deeply concerned about Draft Bulletin No. 16-04. While the bulletin does clarify the acceptability of a small segment of third party assistance (like family members and church groups), it still leaves the vast majority of Idaho’s patient population at grave risk of losing access to premium assistance.

The current language of the draft would allow premium assistance from an “organization/institution that is financially disinterested.” This language is highly problematic. It has and will be used by insurance carriers as cause to reject premium assistance from reputable and established nonprofit organizations.

Furthermore this bulletin offers no protections to charitable nonprofits that take great pains to ensure their premium assistance programs are administered in a responsible and independent manner. We don’t yet know whether the Department of Insurance will reconsider or make these rules final. You can read our full letter by clicking here. Watch a video of John Carter on KTVB here.