Genetic testing for Huntington’s Disease raises common questions on how the results could potentially impact access to health insurance.1 A recent study showed that patients often decide to pay out of pocket for medical service expenses due to the fear of losing their health insurance.2 Alleviating this worry of health insurance loss may help many who are hesitant to pursue genetic testing for financial reasons. Very little data is available on the indirect and out-of-pocket costs of HD in the US; however, a clinical study that is currently underway aims to bridge this gap. The study will use a cross-sectional online study administered to Huntington disease gene expansion carriers (HDGECs) by HD stage to understand these costs. The study is estimated to conclude on December 31, 2021; more information can be found here.
The Genetic Information Non-Discrimination Act3
In trying to address discriminated based on genetic testing results, Congress passed the Genetic Information Non Discrimination Act (GINA) in 2008. This law protects individuals against health insurance and employment discrimination based on genetic testing resuls. Due to GINA, employers and health insurers are prohibited from making employment decisions or coverage determinations based on knowledge that an individual has received genetic services. The passage of GINA also means that genetic information is now treated as health information under the Health Insurance Portability and Accountability Act of 1996 (HIPAA), making genetic information subject to HIPAA’s privacy regulations. GINA includes two sections, or “Titles”:
- Title I prohibits health insurance companies and group health plans from denying coverage or charging a higher premium based on genetic information(2).
- Title II prohibits employers from using an employee’s genetic information to discriminate when making employment decisions about hiring, firing, promotion, or terms of employment(2).
GINA only provides protection under health insurance and Medicare. It is important to note that after qualifying for Social Security Disability Insurance, individuals with Huntington’s disease must wait another 24 months before receiving benefits under the Medicare program.4 The Huntington’s Disease Parity Act (HR. 2589) has been recently introduced and currently advocated for to waive the two-year waiting period for Medicare coverage for those affected by Huntington’s disease.5 Providers of other types of insurance – long- term care insurance, disability insurance, and life insurance – may still request genetic information to determine eligibility and other coverage terms. If an individual is insured under a group health plan, the insurance company cannot change terms due to manifestation, or the development of symptoms of HD. However, if an individual is insured under an individual health plan, then an insurance company reserves the right to change terms.
The Exceptions to GINA3
Although the signing of GINA created expectations that health insurance providers will not discriminate based on genetic information, this law does not prohibit insurance providers from rejecting applications or charging higher rates for people who have a medical diagnosis, such as HD(. Additionally, health insurance organizations may request the results of a genetic test for purposes of determining payment or reimbursement. Specifically, when a physician or other health care professional providing a health care service deems that the appropriateness of a medical treatment depends on an individual’s genetic makeup, the insurance providor is permitted to request that the insured individual undergo a genetic test. Although the individual reserves the freedom to accept or deny this request, if they refuse to undergo the genetic test, then the insurance provider reserves the right not to pay for their medical treatment. The insurance company also has the ability to adjust the individual’s payments based on the outcome of the genetic test, if the individual chooses to undergo genetic testing.
Additionally, GINA allows health insurers or group health plans to request – but not require – an individual to participate in genetic testing for research purposes. In this case, GINA requires a request to be written and communicated clearly with an at-risk individual or family member. It states that the compliance of the individual to undergo testing and participate in the study must be voluntary. Individuals also reserve the right to stop participating in any study at any time without consequences.
Social Security Disability Insurance6
Social security disability insurance (SSDI) is intended to pay benefits to those with a disability when they are no longer able to work. To qualify for Social Security disability benefits, an individual must be able to prove that they are disabled to the point that they cannot reasonably continue to work in any form of gainful employment. SSDI determines coverage based on work credits, which is determined by the number of years you have worked and paid taxes into the federal system. Age also contributes to determining the number of years needed to qualify for benefits7.
You can find more information about disability insurance here.
Long Term Care Insurance8
Long term care (LTC) insurances are designed to pay a daily rate that assists in covering the costs of care when an individual has a chronic medical condition and/or a disability, such as HD. More specifically, this insurance assists with nursing home and/or adult day care expenses, assisted living costs, and in-home care and home modification expenses, such as wheelchair ramps. The daily rate a person receives will depend on the extensiveness of the LTC policy purchased, as well as their age when they apply. Unfortunately, GINA does not apply to LTC insurance; this means that LTC insurance companies reserve the right to deny someone insurance based on their genetic risk, gene status, or disease state(7). However, it is possible to avoid this risk by enrolling in LTC insurance prior to pursuing genetic testing. LTC insurance companies may reserve the right to request family history (i.e. HD) when enrolling, although some may not require this information. While Medicare does cover a short-period care if an individual requires skilled services or rehabilitative care (i.e. after a surgery), it does not pay for in-home care or non-skilled assistance with Activities of Daily Living (ADL), which make up the majority of long-term care services.This limits which facilities a person can consider. Due to State Partnership Programs that link special Partnership-qualified (PQ) long-term policies provided by private insurance companies with Medicaid, Medicaid does cover a share of long-term care services due. However, minimum state eligibility requirements based on the amount of assistance an individual will need with ADL, as well as income level requirements must be met. Additionally, while employee-sponsored insurance or private health insurance plans offered by a company may include an LTC component, it is often limited to skilled, short-term, medically necessary care.
Another option is to pursue a private insurance company that offers LTC insurance. As “private pay” consumers, LTC insured individuals often have more autonomy in their provider of care or services, as long as they are licensed companies. According to the National Association of Insurance Commissioners, most insurance policies define a pre-existing condition as “one for which you received medical advice or treatment or had symptoms within a certain period before you applied for the policy.” This specific time period varies between LTC insurances. Additionally, it is common for companies to require individuals to submit a physical. Because insurance companies may not be familiar with the physical implications of HD and genetic testing, it is important to inquire about what the exam results would entail under the LTC policy they offer. Companies may also not pay LTC related benefits for a period after the policy goes into effect. This period, which is usually 6 months long, is known as the “elimination period”, and varies between insurance policies. Some companies may not have pre-existing condition periods at all9.
You can find more information about long term care insurance here.
Varying access to life insurance among individuals diagnosed with a degenerative disease stems from variable life expectancies. Despite the fact that someone diagnosed with HD will typically live between 10-30 years from the date of their diagnosis, individuals with a diagnosis do not qualify for a “traditional term” or “whole life” insurance policy. Some life insurance policies may offer accelerated death benefits (ADBs), which allow an individual to receive a tax-free advance on their life insurance death benefit while they are still alive, typically at the cost of a higher premium. Most, if not all, life insurance companies limit the options of at-risk or diagnosed individuals to an option known as guaranteed-issue life insurance.
Guaranteed-Issue life insurance
Guaranteed-issue life insurance is a policy available for all US citizens between the ages of 40-85, meaning genetic test results will not affect eligibility for this insurance policy. Guaranteed-issue life insurance policies do not require an individual to provide any information regarding their medical history or current health. While guaranteed-issue life insurance policies insure all qualifying individuals, they also have drawbacks such as “graded death benefits”. Graded death benefits are clauses written into a guaranteed-issue life insurance policy that limit when an individual’s life insurance policy will begin to cover them for natural causes of death. A typical graded death benefit will state that an individual must remain alive for at least 2-3 years after purchasing their guaranteed issue policy before qualifying for their coverage of a “natural” or “illness based” death. Additionally, guaranteed-issue life insurance policies are often more expensive than traditional types of life insurance, and are specifically designed to cover final expenses; it is unlikely that a diagnosed individual will find a policy that covers expenses beyond this, such as covering family supplemental income.
Final Expense Insurance and Burial insurance
Final expense insurance is intended to cover burial expenses, such as a grave marker and cemetery plot, and other final expenses, such as any outstanding debts that are not forgivable upon death. Since life expectancies for every person with HD varies, most burial insurance companies will only write guaranteed-issue life insurance policies for people diagnosed with HD, oftentimes at a higher cost. Typically, guaranteed-issue life insurance policies have a 24 month waiting period before covering these final expenses. If an insured individual passes during the first two years, the insurance company will refund all the cost, plus interest. This insurance policy usually ranges between $5,000 to $25,000 to cover expenses. 11
Burial insurance, or “funeral insurance policy”, is intended to cover burial or funeral home expenses. Once an insured individual passes away, the policy provides this coverage, usually ranging from $5,000 to $25,000. The biggest difference between final expense insurance and burial insurance is that final expense insurance typically includes final expenses in addition to the cost of a burial. Burial insurance is solely intended to cover the costs of funeral expenses. 5
There are federal or state programs that pay for housing for people above a certain age with low or moderate incomes, specifically less than $46,000 if single or $53,000 if married. The programs will review an individual’s monthly income and expenses on a regular basis to verify eligibility. Under these programs, recipients are allowed to live in their own apartments within approved complexes. To find out more about subsidized housing in your area, visit the U.S. Department of Housing and Urban Development-Subsidized Housing website here. 12
Another option is assisted living facilities, which provide room and board, social and recreational activities, and help with personal care and ADLs. Residents are expected to pay for the cost of medical and nursing services separately. There is also the option of a continuing care retirement community (CCRC), a community living arrangement, typically on a single campus, that provides housing, health care, and social services. CCRCs offer different levels of services ranging from independent housing to nursing home care. CCRCs charge a monthly fee based on the size of a person’s independent living unit, and an entrance fee. Some CCRCs may also require a health screening before a potential resident can move into a unit, and may allow the resident to hire their own home health care services while residing in an independent living unit13.
- van Walsem, M.R., Howe, E.I., Iversen, K. et al. Unmet needs for healthcare and social support services in patients with Huntington’s disease: a cross-sectional population-based study. Orphanet J Rare Dis 10, 124 (2015). https://doi.org/10.1186/s13023-015-0324-8
- Oster E, Dorsey ER, Bausch J, et al. Fear of health insurance loss among individuals at risk for Huntington disease. Am J Med Genet A. 2008;146A(16):2070-2077. doi:10.1002/ajmg.a.32422
- The Genetic Information Nondiscribimatory Act of 2008. U.S. Equal Employment Opportunity Commission. https://www.genome.gov/about-genomics/policy-issues/Genetic-Discrimination
- H.R.2589 – Huntington’s Disease Parity Act of 2017. Congres.Gov. https://www.congress.gov/bill/115th-congress/house-bill/2589?s=1&r=96
- Disability benefits. Social Security Administration. https://www.ssa.gov/pubs/EN-05-10029.pdf
- Social Security Disability. HDSA. https://hdsa.org/social-security-disability/
- Where to look for long-term care insurance. U.S. Department of Health & Human Services. https://longtermcare.acl.gov/costs-how-to-pay/what-is-long-term-care-insurance/where-to-look-for-long-term-care-insurance.html
- Barton.S. K. Long Term Care insurance. HDSA. https://hdsa.org/wp-content/uploads/2015/03/HDSA_WeAre_News_Feb_13_final_web.pdf
- Using life insurance to pay for long-term care. U.S. Department of Health & Human Services. https://longtermcare.acl.gov/costs-how-to-pay/what-is-long-term-care-insurance/where-to-look-for-long-term-care-insurance.html
- Burial Insurance with Huntington’s Disease. Burial Insurance Neurological Impairments. https://funeralfunds.com/burial-insurance-huntingtons-disease/
- Continuing Care Retirement Communities. Administration on Aging. https://longtermcare.acl.gov/where-you-live-matters/living-in-a-facility/continuing-care-retirement-communities.html
- Assisted Living. Administration on Aging. https://longtermcare.acl.gov/where-you-live-matters/living-in-a-facility/assisted-living.html