Alzheimer’s drugs are often costly and they do not offer a cure. But patients and family members who want to slow a debilitating disease often pay the high prices, even if their insurance doesn’t cover it.

Ruth Gay, the director of public policy and advocacy for the Northern California Alzheimer’s Association, said her agency has been watching closely as the Affordable Care Act progresses. Benefits for the elderly so far include better prescription care coverage, which started this year.

More benefits are expected, including a mandatory screening for Alzheimer’s and other forms of dementia as part of routine care for people over 65.

“For a lot of seniors that doughnut hole is a big piece we were interested in – many of them were hitting it very early on,” Gay said.

The doughnut hole Gay is referring to is a gap in prescription coverage under Medicare Plan D. In 2013, patients on Medicare Plan D can accrue up to $2,970 in out-of-pocket and insurance payments before they go into the “doughnut hole.”

The ACA is slowly eliminating the doughnut hole. Now, when patients reach the $2,970 limit, they get a 50 percent discount on brand-name medicines and 14 percent on generics until they reach an out-of-pocket expense total of $4,750. At that point they pay 5 percent of prescription costs for the remainder of the year.

The doughnut hole will be closed altogether by 2021.

Central Coast resident Reta Rochelle spends a lot of time on price comparison for the many prescription drugs her husband takes to combat Alzheimer’s and a variety of other ailments associated with aging. The senior citizens have a private insurance plan that allows them to get reimbursed for 80 percent of their prescription drug costs, but paying out-of-pocket up front for medications means a hefty price tag each month. Rochelle estimated she and her husband spend more than $600 a month out of pocket.

“It’s a stage in life when the average couple is living tight on a budget, even though we have insurance,” Rochelle said.

Gay said one of the most common Alzheimer’s drugs, Aricept, recently became a generic so the price has gone down. But many others such as Exelon, Razadyne and Namenda can range from $250-325 a month per prescription.

“Patients are sometimes also on other medications to help treat symptoms and many of those newer drugs are not generic,” she said. “I’ve talked with many families who pay up to $700 (a month) if they are not in a health plan that pays for it. If they hit the doughnut hole they have to pay out of pocket. For many families the cost is prohibitive.”
Gay said the drugs on the market can also cause a lot of side effects for patients, such as gastrointestinal issues.

“The other piece is if we have a disease-altering drug that will change the course of the disease – and we hope there will be one out in the next five to 10 years – it will certainly be expensive,” Gay said. “We want people to get those drugs if it can change them. Alzheimer’s is by far one of the most feared diseases in the country.”

The Alzheimer’s Association advocates are also interested in other components of the ACA law, particularly one that includes a cognitive assessment for people 65 and older as part of their annual wellness check.

“We know across the country less than 50 percent of patients are given an adequate diagnosis,” Gay said. “There will now be a reimbursement for doctors who just include a baseline screening. It will help to identify people earlier and refer some to specialists or if they are doing fine, tell them to keep doing what they are doing.”

Gay said health-care reform is expected to include more avenues for intervention so those who are identified with cognitive impairments will receive services early on. She said part of the effort with reform is to have doctors or medical practices take more of a team approach.

“If people can remain at home and connect with services in the community as opposed to being pushed toward the placement approach,” Gay said.

She said once a patient with Alzheimer’s is hospitalized or institutionalized the cost for more intensive care goes up.

“If you have any condition, whether it is diabetes or a heart condition, if you break a hip,” Gay said, “If you take that and add Alzheimer’s to it, you triple the cost. The individual struggles to manage care and loses the ability to take care of their health needs.”

Gay said early diagnosis of the disease can also allow a patient to make decisions about their treatment as well as end-of-life decisions.

“From a human perspective moving toward trying to identify people earlier is important so they can still be part of the planning,” she said.

People under 65 who develop early onset Alzheimer’s or other forms of dementia will benefit from the part of ACA that requires health insurances to cover pre-existing conditions.

“What happens often is that if they are working, they have to leave their job,” Gay said. “If they have insurance, they lose their insurance.”

She said in the past it would be difficult for such a patient to get health coverage.

“There are many challenges when someone is younger,” Gay said. “They may have children at home. They are often in their peak earning years. It’s a huge economic impact for that population – add a lack of insurance and you can imagine it’s a huge burden for families.”

Advocates with the Northern California Alzheimer’s Association are optimistic about the effects of the ACA.

“If the ACA does indeed include things like care coordinator and broader access to community-based programs for cognitive impairments, it will be a game changer for families,” Gay said. “This is a disease that bankrupts families, unless you have long-term care insurance. Finally we have a health system that is reforming in a way that may enhance the quality of life for people.”