Healthcare Insurance and Disability | The Marfan Foundation

Healthcare Insurance and Disability

It is critical for people with a chronic illness, such as Marfan syndrome and related disorders, to have appropriate health insurance. That’s why we encourage you to learn about health insurance, know your rights, and educate yourself about your diagnosis.

To start, make sure you understand health insurance terminology. The federal government has a glossary for your reference.

If you have health insurance, be sure to read your insurance plan carefully and keep in mind the features of your condition that affect you and your family members now, as well as which features could become more serious in the future and require additional medication and surgery. When you are evaluating your current health insurance or exploring new plans, make sure it:

  • Includes disability services
  • Covers major surgeries and, if so, what percentage of the cost does the plan cover
  • Provides discounts on medications
  • Allows you to visit the healthcare provider of your choice and, if not, provides in-network access to doctors who are familiar with Marfan syndrome and related disorders
  • Covers out-of-state doctors and surgeons
  • Covers treatment for genetic disorders/pre-existing conditions
  • Requires you to be responsible for a co-payment

If you do not have insurance, or if you feel that your insurance plan is not right for you, it is important to learn more about getting care and coverage by insurance. Remember that going without health coverage for more than 63 days will result in the loss of some legal protections; therefore, we urge everyone to stay insured if at all possible. Here are some helpful websites that offer information about various types of insurance and eligibility requirements.

It’s also important to understand your rights when it comes to insurance, health-related laws, and social security and disability benefits. Here are some useful websites to help you increase your knowledge in these areas.

Many hospitals have policies in place to offer free or reduced-price care for those who are uninsured. Hospital and clinic social workers or billing departments can often help identify sources of low- or no-cost care in your community and help you apply for Medicaid/Medicare and other local programs.

Even if you or your loved one with Marfan syndrome or a related disorder does not have health insurance, a hospital must stabilize anyone in an emergency. If you have a medical emergency, do not hesitate to go to the nearest hospital emergency room.

Educate yourself about Marfan syndrome features and complications by reading the information on this website and contacting our help center (800-8-MARFAN, ext. 126 or support@marfan.org)

Did you know that...

  • Employers are not required to offer health coverage to their employees and/or dependents.
  • An employer cannot deny a job based on a disability.
  • You cannot be excluded or dropped from your group health plan due to a Marfan syndrome or related disorder diagnosis.
  • If you are in between jobs you may be eligible to continue being covered by your former employer’s health insurance plan through the Family Medical Leave Act, COBRA, and State Continuation laws.
  • You have a right to appeal a health plan decision.
  • You should carefully examine your medical bills. You can negotiate the price down if you are unable to pay. Don’t be embarrassed to ask for financial assistance; work out a payment plan if necessary.

We’re here to help. Contact our help center (800-8-MARFAN, ext. 126) for:

  • More information about Marfan syndrome and related disorders.
  • Assistance in applying for social security benefits, including Supplemental Security Income (SSI) and/or Social security Disability Insurance (SSDI).
  • Answers to your health insurance questions.