Arches. Photo by Daniel Chia
HOPES: Huntington's Outreach Project for Education, at Stanford
Aug
30
2011

Insurance and HD

Healthcare reform has been a hot topic in the United States in recent years, and many important changes are continually being made. In this article, we will take a look at some alterations that are particularly relevant to HD patients and their families. The first half of the article discusses the Genetic Information Nondiscrimination Act (GINA), and how it impacts insurance and employment for individuals who are at-risk for genetic conditions like HD, as well as those who are considering a genetic test. Next, this article covers the new Affordable Care Act, and changes to insurance policies for patients with pre-existing conditions, such as HD.

GINA (Genetic Information Nondiscrimination Act)^

In May of 2008, the updated Genetic Information Nondiscrimination Act (GINA) was signed into federal law. All of its contents came into effect by May 21, 2010.

What does GINA cover?^

GINA is meant to prohibit health insurers and employers from discriminating against anyone based on genetic information. This means that no one can be denied insurance or charged a higher premium based on genetic information, and that health insurance companies cannot request genetic information from any person or their family members. In addition, employers cannot make decisions about hiring, firing, or promotion based on genetic information.

What qualifies as genetic information?^

  • Any genetic tests of an individual, including those done in a research study. A genetic test is formally defined as “an analysis of human DNA, RNA, chromosomes, proteins, or metabolites that detects genotypes, mutations, or chromosomal changes.”
  • Results of a genetic test or record of participation in services such as genetic testing, genetic research, and genetic counseling for an individual’s family members, up to 4th degree relatives
  • Genetic tests of a fetus or embryo, including those conceived through IVF
  • Family history of any genetic diseases or disorders

What is not covered by GINA?^

GINA does not apply to life insurance, disability insurance, long-term care insurance, and employers with fewer than 15 employees.

It is also important to note that GINA is not retroactive, meaning that any decisions made before the law came into effect cannot be challenged. However, any employer or insurer who holds genetic information can no longer use it, even if the information was obtained before GINA existed.

Once someone exhibits symptoms of a genetic disease or disorder, that individual is not covered by GINA. In this case, any insurance or employment decisions made based on the existing condition are legal. For patients at this stage of disease, the Affordable Care Act of 2010 may be relevant.

Affordable Care Act ^

What is the Affordable Care Act?^

Signed in March of 2010, the Affordable Care Act introduces a wide variety of changes to health insurance policies and costs in the United States. Its various components are being implemented independently, so pay attention to when each change becomes law!

What if I have HD and don’t have insurance right now? ^

Under the Affordable Care Act, adults with existing disabilities and mental or physical illnesses cannot be denied health insurance coverage as of January 1, 2014. The same rule has been in place for children since September 23, 2010.

If you are an HD patient, one current option for coverage is the Pre-Existing Condition Insurance Plan (PCIP) in your state. Some states are choosing to operate their own PCIPs, while others are offering federally-run plans.

All legal U.S. residents who have been without insurance for at least six months may apply for PCIP coverage. This also applies to those who have been denied insurance or charged an unaffordable premium in the past due to their condition. Eligibility is not based on income. PCIP covers primary and specialty care, hospital care, and prescription drugs, including any services needed to treat or manage a pre-existing condition. Note, however, that a positive genetic test for HD cannot be considered a pre-existing condition, so individuals with a positive gene test can and should apply for regular insurance programs instead of PCIP.

Currently, because PCIP premium amounts vary from state to state, some patients may need to apply for Medicaid or other assistance programs if PCIP costs are too high. In these cases, all terms and conditions for Medicaid eligibility must be met, regardless of any pre-existing conditions. Gaining better coverage for low-income or unemployed individuals is an ongoing effort, but there has not been significant progress on this front.

What if I have HD and already have insurance?^

If you have had health insurance coverage since September 23, 2010, your insurer cannot unfairly cancel coverage, deny services, or raise premiums, even if your condition worsens and demands expensive treatments or medications. This applies even if you accidentally forgot to mention a symptom experienced or treatment received when submitting your insurance application. Note, however, that intentional omissions, untrue information, and late payments can still be used as reasons to cancel coverage or refuse services.

Lifetime dollar amount limits on essential services have also been illegal since September 23, 2010, and annual limits will be banned for many services after January 1, 2014. If financial hardship or another extenuating circumstance causes you to lose coverage, insurers must provide a 30-day warning before terminating your policy. You will be eligible to apply for PCIP 6 months after the termination.

A new Healthcare Exchange program is currently in the works, and may provide better coverage or lower premium options for patients with pre-existing conditions, such as HD. Many changes have been discussed and considered in Congress over the past few years, so staying informed about the latest developments in healthcare reform is necessary and helpful.

For Further Reading:^

The government’s official guide to the Affordable Care Act
http://www.healthcare.gov/law/introduction/index.html

Full text of the Genetic Non-Discrimination Act of 2008
http://thomas.loc.gov/cgi-bin/bdquery/z?d110:HR00493:

Kaiser Family Foundation’s Guide to Health Reform (very up-to-date)
http://healthreform.kff.org/

S. Liou, 8/30/2011