The first Autosomal-Dominant AD Family Conference of the Dominantly Inherited Family Network (see Part 1) showcased gaps in legal, financial, and caregiver-support systems. On a more hopeful note, the families heard that the chronic low tide of federal funding for Alzheimer’s research may be slowly turning as the Alzheimer’s Accountability Act starts to take hold.

In May 2008, President George W. Bush signed into law the Genetic Information Non-Discrimination Act to prohibit discrimination in health coverage and employment based on genetic information. GINA sets a federal minimum standard for genetic privacy, though some states have put stronger protections in place (see NHGRIGINA & You). The families quizzed speakers about the things to which GINA does not apply—e.g., life, disability, and long-term care insurance—and how to navigate testing and insurance. Besides insurance, obtaining disability benefits and legal protection presents a struggle for many families with ADAD. Sheri Abrams, an attorney who specializes in social security disability law and special-needs planning, took questions about how to navigate the bureaucratic process. Her advice included screening medical records before submitting them, never understating problems at home during doctors’ visits, and applying for disability benefits before the gene carrier becomes symptomatic and, potentially, laid off. A common problem for people from families with ADAD is that between caring for a parent in their 20s and becoming symptomatic themselves in their 40s, they have not worked enough years to qualify for social security disability, which is based solely on work history.

Q: When to apply for insurance—before or after testing?
A: Before. Consider long-term care insurance first. You need that because most people with AD spend years in assisted living before entering a nursing home, and Medicaid only covers nursing home care, not assisted living.

Q: My husband got tested years ago, but it is not in his medical records yet. What do I check on the insurance application?
A: The genetic diagnosis alone is not the “condition” yet, so you can check no. Once he has a diagnosis of the symptoms you have to be truthful, otherwise insurance may deny you when you claim a benefit. They may investigate and find out if you hid a pre-existing condition.

Q: What are shadow charts?
A: In the context of genetic testing, it’s when your test provider creates a medical record with a number or initial separate from your primary medical record. Shadow charts have fallen out of favor, though. Say you have a positive test and 10 years later get symptoms and see a neurologist. Then it is difficult to retroactively incorporate the genetic test into your medical record to clarify that that is what is going on with you now, and you have to repeat the test. It’s better to keep a paper record of the test under your real name but store it separately from your electronic record.

Q: Am I required to tell the insurance provider that I participate in research?
A: No.

Q: To get social security disability, you have to show decline. For those of us who are asymptomatic, can we use the DIAN records for that?
A: No. Cognitive test results from DIAN are used for research purposes only, and are not shared with participants or outside groups. To show decline in your social security disability application, it’s best to visit a doctor after your long-term care insurance is in place. That provides a start date to later show decline. DIAN’s refusal to share research data protects you in other situations, for instance if an insurance company calls to ask about a participant. Importantly, when medical information comes up during the assessments—for example, a tumor or an aneurysm—that information is shared with the participant. 

Families with ADAD can tap certain support services, but some fall between the cracks of a patchwork of federal and state programs. For example, many symptomatic carriers who get laid off are too young for Medicare but not poor enough to qualify for Medicaid. Robert Kramer, the associate director of public policy for the Alzheimer’s Association, told the audience that as a consequence of the Affordable Care Act many states have broadened eligibility for Medicaid, which covers the cost of diagnosis, treatment, and some home- and community-based services.

Federal funds to provide support services to caregivers are disbursed to states for their discretionary spending under the Older Americans Act. The Act's authorization ran out in 2010, and though the U.S. Senate passed a reauthorization bill on 16 July 2015, that bill awaits action in the House. As it is, the law is underfunded and prioritizes services for people over the age of 60, Kramer said. The PACE program delivers comprehensive care for people with ADAD, but is not available everywhere in the United States and excludes people under 55. The Senate has passed a pilot bill to expand PACE, but the House has not yet acted on it, Kramer said.

In the course of AAIC, there was new momentum in Washington to fund both care services and research. On 16 July 2015, the Alzheimer Caregiver Support Act, originally introduced in 2013 by California Democrat Maxine Waters, was reintroduced as part of a legislative package on Alzheimer’s disease (see press release). 

The bigger news occurred around federal funding for research. It was brewing right when the families were meeting. ADAD families are well aware of the longstanding disparity between big killers such as cancer ($5.5 billion in fiscal year 2015), HIV ($3 billion), and Alzheimer’s ($580 million). During their trip to Washington, some DIAN participants visited Capitol Hill to advocate for more funding. At the family conference, Neil Buckholtz of the National Institute on Aging (NIA) reminded the families that in June the House and Senate Appropriations Committees approved increases for fiscal 2016 of $300 million and $350 million, respectively.

Better yet, Buckholtz explained, for fiscal 2017 the NIA is preparing the so-called Professional Judgment Budget mandated by the Alzheimer’s Accountability Act. This type of budget process estimates how much money will be needed to realize research milestones set out in the National Plan to Address Alzheimer’s Disease (NAPA) and defined in more detail in recommendations from the NIH AD Research Summit (see May 2015 news). The idea is to calculate the amount of money that can be put to immediate use based on the current state of the science. Importantly, this type of budget, also called a bypass budget, goes from the NIH director straight to the president, bypassing some of the usual bureaucratic channels where it could be cut. (Others in the department of Health and Human Services can review and comment on the bypass budget, but cannot change it.) Bypass budgets are rare: Only cancer and HIV have gotten them previously, indicating that Congress is starting to put Alzheimer’s on an equal footing. It is more than a one-off: The NIH will prepare an annual bypass budget for the next 10 years.

On July 27, news broke that the professional judgment budget had recommended an additional $323 million be spent on AD research in fiscal year 2017 (see Bypass Budget Proposal). The budget specifically mentions the Dominantly Inherited Alzheimer Network and other secondary prevention initiatives. For individual family stories and debate with pharma and regulatory scientists, see Part 3 of this series.—Gabrielle Strobel


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News Citations

  1. 100 DIAN Family Members Gather for Their First International Meeting
  2. Research Summit 2015 Recommendations Released

External Citations

  1. NHGRI
  2. GINA & You
  3. Sheri Abrams
  4. PACE program
  5. Alzheimer Caregiver Support Act
  6. press release
  7. Alzheimer’s Accountability Act
  8. National Plan to Address Alzheimer’s Disease
  9. Bypass Budget Proposal

Further Reading

No Available Further Reading