Alzheimer’s disease exacts a devastating toll on patients and caregivers.

“Many people end up in long-term care or nursing homes, and require around-the-clock care for many years,”explains Keith Fargo, director of scientific programs and outreach for the Alzheimer’s Association. “This isn’t like you get a heart attack and you pass away. You get this degenerative disease and it requires that you get care for many years.”

As Baby Boomers approach their golden years, the destructive human cost of Alzheimer’s disease will be compounded by massive economic costs. In just two decades, Alzheimer’s patients alone could account for as much as 25 percent of Medicare spending – a staggering $328 billion per year.

“Alzheimer’s disease is a devastating chronic disease that significantly increases healthcare costs and affects the quality of life of the afflicted patients and their caregivers,” warn researchers Carolyn Zhu and Mary Sano with Bronx VA Medical Center in New York. “Population aging and other demographic changes may further increase the already staggering costs of this devastating disease.”

By 2040, more than 10.3 million Americans will be living with Alzheimer’s disease – more than double the 4.7 million Alzheimer’s patients as of 2015. A 2015 study presented at the Alzheimer’s Association International Conference cautioned that more than 28 million Baby Boomers will develop Alzheimer’s disease by 2050.

Care and treatment advancements are helping many patients live for decades after an Alzheimer’s diagnosis. But, a short-term transformative therapy to cure Alzheimer’s remains elusive.

“If we’re going to change the current trajectory of the disease, we need consistent and meaningful investments in research,” Maria Carrillo, chief science officer at the Alzheimer’s Association, warned in 2015.

Unfortunately, health care cost regulators are proposing value frameworks that could move us in the wrong direction for Alzheimer’s research.

SST: ICER Stalls Innovation into Short-Term Transformative Therapies

This summer, the controversial Institute for Clinical and Economic Review, which works with insurance companies to evaluate how medical treatments affect insurance profits, published a new report calling for price caps and access barriers for “single or short-term transformative therapies.”

SSTs are considered game changers in medicine with the potential to cure rare, fatal or chronic diseases, such as Alzheimer’s disease. They also include innovative treatments that deliver remarkable health outcomes that halt a disease’s progression.

Experts in medical innovation warn that ICER’s “Proposed Methods Adaptions for Assessments of Potential Cures and Other Transformative Therapies” hurts patients, stifles innovation and undervalues the potential value of transformative therapies.

“There is no doubt that the cost of treatment is complex and deserves more attention, but is this the approach that we should follow, especially when lives hang in the balance?” asks Naomi Lopez Bauman, Director of Healthcare Policy at the Goldwater Institute, a public policy research organization based in Phoenix, Arizona. “ICER’s approach of setting a dollar amount on the value of a patient’s life is not only immoral, but dangerous for all of us.”

ICER’s Flawed Report Ignores Long-Term Savings

For years, ICER’s cost appraisers have argued that patients should be denied access to life-saving treatments because of budgetary constraints.

“We want to ring an alarm bell if we think short-term budget costs are going to rise and it would harm the national economy,” ICER President Dr. Steve Pearson said in 2016.

ICER SST Single or Short Term Transformative Therapies

Now, ICER has flip-flopped with respect to its position about budget constraints. When it comes to transformative therapies, such as cures for Alzheimer’s disease, the organization says it will cap economic benefits to 12 years in its economic analyses.

“The scenario will assume that all cost offsets following year 12 in the model will accrue to the health system, i.e. cost offsets will be set to zero in the model after year 12,” ICER states in its “Value Assessment Methods and Pricing Recommendations for Potential Cures: A Technical Brief.”

“Using this approach, innovators would get some, but not all, the economic surplus arising from an SST.”

Patient advocates say that amounts to cherry-picking data to reach a predetermined agenda and, ultimately, stifles innovation into groundbreaking medical research.

“With each new report, ICER shows its real agenda is more concerned with the bottom line of insurance companies, and not the lives of patients,” explains Terry Wilcox, executive director at Patients Rising, a national patient advocacy non-profit organization. “Patients with Alzheimer’s disease can live for decades after a diagnosis. By placing an arbitrary cap on 12 years, ICER undermines the economic incentive to invest in medical research.”

The document also reveals ICER’s concern for insurance profits, what it dubs “payer risk.”

“In applying this more stringent approach, there is therefore still the danger of not adequately managing payer risk for products that appear to be very beneficial to patients but where the magnitude and variance of that benefit is not known,” the August 2019 report states.

Patient advocates like Wilcox of Patients Rising put it more bluntly.

“Payer risk is just doublespeak for insurance profits,” she says.