Taking a page from the HIV/AIDS movement to boost Alzheimer’s advocacy

Many people living with HIV/AIDS today owe their lives to the successful advocacy movement that came of age in the 1980s and 1990s. And while HIV/AIDS affects far too many people, the remarkable advancements in the nation’s response to this epidemic would likely not have been realized were it not for the unrelenting determination of thousands of passionate and highly mobilized advocates.

The progress we’ve seen in HIV/AIDS demonstrates the vital role advocates play in battling epidemics. And while the HIV epidemic is far from over, this fight offers valuable lessons to those pushing for effective treatment and a cure for another debilitating disease—Alzheimer’s.

As the head of a national HIV nonprofit, I’ve seen how from the beginning of the epidemic impassioned and smart advocacy can save lives and lead to better policy, better research, and better treatment. And having watched my own grandmother suffer for years with Alzheimer’s disease, I realize that the approaches to and successes in HIV/AIDS advocacy can help shape the fight against Alzheimer’s.

{mosads}The roughly 5.1 million Americans currently suffering from Alzheimer’s are in a very similar position as people living with HIV were in twenty years ago. Advancements in treatments for this degenerative brain disease have been disparagingly slow. And those diagnosed with Alzheimer’s — and their families — are often left with few tools to slow the illness.

Worse, the risk of developing Alzheimer’s increases dramatically with age. By the year 2050, an astonishing 88.5 million Americans — roughly 20 percent of the population — will be 65 or older. The 2010 National Alzheimer’s Project Act was meant to create an effective national strategy for battling the rapidly rising rates of this disease. But so far federal efforts have been insufficiently focused on early diagnosis and the creation of new treatments. The absence of a robust national response helps explain why half of all people living with Alzheimer’s go undiagnosed.

By contrast, the early and sustained HIV/AIDS advocacy movement and other similar initiatives have shown that early diagnosis improves and saves lives. Alzheimer’s advocates should follow suit. Today, patients are usually diagnosed only once they show signs of mental decline. By that time, they’ve already suffered serious brain damage. The good news is that scientists are currently developing “biomarkers” to detect Alzheimer’s in patients before symptoms arise. And researchers have recently introduced a new technology called “brain amyloid imaging,” which can accurately detect neural decay in patients suffering from the earliest stages of the disease.

Early detection and new treatment options are not only good for patients and their families, these strategies can help drive down health care costs over time. In 2013 alone, the cost of caring for Alzheimer’s patients is expected to reach $203 billion — the majority of that expense will fall on Medicare. Refusing to cover advanced diagnostic tests only drives up the long-term costs of the illness. By 2050, spending on Alzheimer’s treatment could reach $1.2 trillion a year, including a six-fold increase in Medicare and Medicaid costs.

Of course, in order for early detection to be maximally effective, researchers must develop treatments that target the disease in its beginning stages. Here, too, we must make the case to our elected representatives in Washington and the administration—as well as to the research community and drug companies—to increase their focus on Alzheimer’s research.

As we press for investments today in broader screening protocols and more effective diagnostics, we must also promote the long-term health system savings that will follow for years to come. At the same time, we need to press Medicare and private insurance companies to cover routine screenings for Alzheimer’s .

HealthHIV commits to partnering with our fellow advocates to advance a more robust and sustained national response to Alzheimer’s disease. After all, the HIV advocacy successes of the last 30 years remain as relevant today as ever.

Hujdich is the executive director of HealthHIV in Washington, D.C.., one of the nation’s largest HIV nonprofit organizations.