The Daily Rise: Monday, May 2

Good News to Start Your Week

We’re starting our week off right — with a video that tells the story of innovation.

For the past fifteen years, Don has been confined to a ventilator as part of his treatment for ALS. He’s been communicating with his wife, Lorraine, through the tedious process of using a letter board.

That’s until Mick Ebeling — the founder of Not Impossible Labs — created a device that speeds up the communication process and allows him to use a simulated audible voice.

We love this video because it shows that every patient needs the right treatment that is designed to meet their individual needs.

One Size Doesn’t Fit All

Anyone who wonders how nuanced topics, such as reimbursement rates, affect patients must read Marcia Boyle’s latest piece published at The Hill.

The president and founder of the Immune Deficiency Foundation takes on the Centers for Medicare & Medicaid Services’s “one size fits all” changes to treating seniors with rare and chronic diseases. She warns that patients with primary immunodeficiency diseases are likely to be affected by the proposed changes to reimbursement rates. In the past, patients with PI have been the victims of cost-cutting measures that have effectively limited access to treatments.

“Unfortunately, access to this life-saving therapy could be threatened as a result of an experimental initiative recently announced by the Centers for Medicare & Medicaid Services (CMS),” she writes. “Patients with PI are not ‘crying wolf.’ In the past, the PI community experienced serious disruption in access to care resulting from Medicare reimbursement changes.”

In 2003, patients with primary immunodeficiency diseases were left without proper access to intravenous immunoglobulin as a result of changes imposed by the Medicare Modernization Act of 2003, which altered Part B drug reimbursement from average wholesale price to average sales price. The Health and Human Services Office of Inspector General reported to Congress that, “Sixty-one percent of responding physicians indicated that they had sent patients to hospitals for IVIG treatment because of their inability to acquire adequate amounts of IVIG or problems with Medicare payment.”

Given past problems, it’s troubling that these CMS changes have been rushed into effect with little consideration of the effects on patients — a point made by Boyle.

“Perhaps more concerning is that when developing this new payment model, CMS made no effort to hear from patients or physicians – the two groups primarily impacted,” she syas. “I, and the patients and physicians of the PI community, strongly oppose any effort to rush through a regulatory initiative that may adversely impact patients’ access to life-saving and life-enhancing Medicare Part B covered therapies.”

State Spotlight: New York Change Hep C Coverage

New York patients with Hepatitis C received some good news last week, as seven major insurance companies agreed to cover life-saving treatments.

The Wall Street Journal’s Corinne Ramey reports that, under a deal reached with the office of State Attorney General Eric Schneiderman, insurance companies will be required “to cover hepatitis C medications for nearly all patients who have commercial insurance plans in the state.”

The deal is the result of an extensive investigation by the New York State Attorney General, which found insurance companies denied upwards of 70 percent of claims. Only the sickest patients received access to the right treatment.

“Last year, Mr. Schneiderman’s office began an investigation into coverage of drugs for chronic hepatitis C, issuing subpoenas for documents and claims data to all commercial health insurers in the state,” the Journal reports. “The investigation showed a wide discrepancy in how companies cover these drugs and found some insurers largely covered only patients with advanced stages of the disease, the attorney general’s office said.”

It’s great to see a victory for patients in the Empire State. Let’s hope the momentum in the private sector extends to developing a solution for patients with Hepatitis C that rely on public health services.

“Medicaid insurers are continuing to impose these severe restrictions and onerous prior authorization processes,” Brian Edlin, a professor at Weill Cornell Medical College, told the Journal. “Consequently, this disease will become increasingly a disease of the poor, and health inequities that already exist will sharpen.”

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