Take a look at any recent major news publication. Information about the latest scientific discovery or technological advancements can be found in nearly every issue.
Yet for a disease that currently affects over 5 million Americans and is projected to affect almost 14 million by 2050, shockingly little progress has been made toward effective treatment, let alone a cure. Alzheimer’s disease has perpetually puzzled researchers and healthcare providers alike, leaving the millions of people affected by the disease to wonder if there is any hope.
Alzheimer’s disease (AD) is a multifactorial condition. This means no one single cause is responsible for development of the disease. While there are clearly both genetic and environmental contributions, the specific cause or tipping point likely varies from person to person. This fact alone makes identifying a silver bullet treatment plan very difficult. How do you effectively target a disease with a single treatment if the disease has multiple and varying causes? Additionally, AD can be challenging to diagnose, especially in the early stages of disease when available treatments may be the most beneficial. Many dementias look similar, although their underlying causes may vary dramatically. The lack of apparent progress towards treatments to slow progression and a prevention or cure could certainly be attributed to this combination of factors, at least in part.
Why is there not a cure for Alzheimer’s yet?
Although diagnosis and treatment of AD face a variety of challenges, there has been a significant amount of research focused on potential treatments and possible cures.
Researchers were confident a treatment would be identified within mere decades. Unfortunately, the research performed, and subsequently published, all centered around the single, prevailing theory that beta-amyloid accumulation was the target. A recent investigative report published by STAT described how research that explored ideas outside this commonly held belief was discounted, unpublished and in some cases ended the careers of researchers desperate to find answers. Opportunities for novel discoveries, breakthroughs and unpopular hypothesizes rarely emerged due to this tunnel vision within the AD-research landscape.
But can the lack of AD treatment or cures be solely placed on the shoulders of research suppression? Likely no. Funding for AD research has historically been significantly lower than many other common diseases. Until recently, National Institutes of Health (NIH) budgeting provided less than $500 million for research focused on AD and other dementias. In comparison, funding for AIDS research neared $3 billion and cancer research received more than nearly
$5 billion in funding.
The funding disparity is fortunately lessening as significant increases in the NIH budget for AD have been made in recent years. Community-supported fundraising campaigns like the annual Walk to End Alzheimer’s are also a growing source of not only fundraising, but awareness of the disease.
In light of these recent advances, it is easy to see how the combination of novel research suppression with lack of funding certainly contributed to the absence of significant discoveries over the past several decades.
New ideas emerge in Alzheimer’s research
Fortunately, research focusing on different treatment targets is beginning to emerge. Scientists are now recognized and supported for their work around ideas that years ago would have been ignored at best, stifled at worst. Currently, there is early-stage research evaluating exciting and promising ideas, such as the use of vaccines to aid in prevention and gene therapy to help alleviate symptoms. And data collection focused on the variety of potential risk factors can also be used in a more person-centered way given the recent advances in daily health monitoring tools.
Similarly, while there is limited scientific evidence, researchers continue to explore links between herbs with anti-inflammatory and antioxidant properties like turmeric on disease prevention and progression.
Yet more is needed for research, and the missing piece may just be you. You as the patient. You as the caregiver. You as the unaffected. You can help advance discoveries in Alzheimer’s disease.
Dawn Barry, Board Chair of the Alzheimer’s Association San Diego/Imperial Chapter and LunaPBC™ Co-Founder and President explains “we must start getting everyone involved in research. Not just people affected but everyone in the ecosystem.” This is why LunaDNA is so passionate about providing you a safe and trusted place to partner with researchers.
“Your data is never sold to third parties and you always have the option of ‘unsharing’ your information,” Barry says. LunaDNA™ also provides a way to overcome the challenge of retrospective research, where data is only obtained after the disease has developed. Barry argues a better approach is to begin collecting information earlier, as “we have the best chance of finding markers if we begin to study and track health before disease onset happens.”
Without people who are willing to participate, research would simply not exist. If you or someone you love is affected with AD, consider if research participation is right for you.
The combination of increased patient and community participation, funding and the scientific community’s acceptance of a wider variety of research ideas is promising. Many are optimistic this combination of factors will finally move us closer to finding legitimate treatments for AD. And perhaps these treatment breakthroughs will lead to the cure so desperately desired by the millions of people affected by AD every day.
Luna’s suite of tools and services connects communities with researchers to accelerate health discoveries. With participation from more than 180 countries and communities advancing causes including disease-specific, public health, environmental, and emerging interests, Luna empowers these collectives to gather a wide range of data — health records, lived experience, disease history, genomics, and more – for research.
Luna gives academia and industry everything they need from engagement with study participants to data analysis across multiple modalities using a common data model. The platform is compliant with clinical regulatory requirements and international consumer data privacy laws.
By providing privacy-protected individuals a way to continually engage, Luna transforms the traditional patient-disconnected database into a dynamic, longitudinal discovery environment where researchers, industry, and community leaders can leverage a range of tools to surface insights and trends, study disease natural history and biomarkers, and enroll in clinical studies and trials.