Insurance and financial planning

Worried about finding the right health insurance plan? This webinar, Navigating Health Insurance Issues Part 1 from Global Genes | RARE Project can help. And download the slides here!

The National Human Genome Research Institute has links to information on:

Visit the websites often for new information as it becomes available.

Heartland Collaborative provides great resources for individuals with heritable disorders. Watch their webinar on health care plans for children with special health care needs and/or genetic conditions or view the slides.

It is important to prepare for the financial cost that may come with having a genetic condition. Proactive planning will help you prepare emotionally for what is to come and will also help you plan financially for any big procedures or monthly costs that can be expected.

Healthcare providers are great resources to help start making these plans. At your next visit, you can ask the provider to help you create a timeline of any procedures, medicines, or other things that you may need to purchase. Having a clear picture of what is happening now and what you can expect in the future will help you ask your insurance company about coverage.  

Many companies provide financial planning services that specialize in the needs of families caring for a loved one with special health concerns. Before using these services, do the following:

  • Talk to your healthcare providers to understand the expenses associated with upcoming care.
  • Talk to your insurance company to understand your insurance benefits.
  • Think about talking to a family support organization in your state. These groups may be able to explain specific state laws or support systems you can use to get financial help to care for yourself or your family member (see resources below).

Insurance Questions  

Q: I don’t have insurance. How am I going to pay for all of this?

A: Many states have programs in place to help manage the extra costs of having a health condition. Talk to your state or county health department or social workers at your local hospital for more information on available resources. The Affordable Care Act (ACA) that was signed into law in 2010 focuses on expanding access to quality, affordable health coverage for American families. Beginning October 1, 2013 each state will have a health insurance exchange or “marketplace” that can help you find health coverage that fits your budget and meets your needs. With one application, you can see all your options and enroll.

When you use the Health Insurance Marketplace you'll fill out an application and find out if you can get lower costs on your monthly premiums for private insurance plans. You'll find out if you qualify for lower out-of-pocket costs. The Marketplace will also tell you if you qualify for free or low-cost coverage available through Medicaid or the Children's Health Insurance Program (CHIP).]

Q: I have insurance, but will it cover everything my family members or I need?

A: Every insurance company is different, so it is important for you to understand your benefits. First talk with your healthcare provider about what to expect, such as major procedures and monthly expenses. Then you can ask your health insurance company specific questions about what is covered and how much you will have to pay. If you find that your insurance company is not covering enough of the expenses and you are having trouble paying, you may qualify for additional help from the state.

  • The Catalyst Center provides a directory of organizations, sorted by state, that may be able to help families with questions about coverage and financing care for children with special health needs. 
  • The Patient Advocate Foundation helps families settle insurance issues and problems getting care. If you are having trouble getting insurance coverage for treatments you need, contact this organization.

Q: Can my health insurance company discriminate against me because of a genetic condition?

A: The Genetic Information Nondiscrimination Act (GINA) is a federal law that was passed in 2008. It makes it illegal for a health insurance company to change your premiums or deny you coverage based on genetic test results. This means that even if you need to switch health insurance companies, the new company cannot discriminate against you or your family because of a genetic test result. ACA prohibits insurance companies from denying individuals coverage based on a pre-existing condition. Effective in 2010, insurance companies must continue to provide a person or a family coverage regardless of the cost or amount of services used.

Q: How will my insurance coverage be impacted by the Affordable Care Act?

A: Even if you already have insurance, ACA offers new rights and protections that make coverage fairer and easier to understand. These rights and protections provide even more choice and control over your health coverage when key parts of the law take effect in 2014. Key provisions include insurance reforms, new/expanded pathways to coverage (Medicaid expansion, Maintenance of Effort-MOE, Marketplaces), an Individual Mandate requiring every person to have coverage, cost and quality provisions, and dependent coverage for youth up to age 26 on their parent’s plan, effective 2010.

Q: What about other kinds of insurance?

A: Unfortunately, life insurance, long-term care insurance, and disability insurance are not covered by GINA. This does not mean the companies will discriminate against you. But it means there are no protections to make sure it doesn't happen. If you have more questions, go to