If you are uncertain about healthcare provision and payment in your area, it might be important to review options before having a genetic test for BHD syndrome.  In some countries, insurance companies may be able to deny you coverage if you have a hereditary syndrome, so it may be useful to do your own research.

Most of the information here pertains to the United States, with some information about Australia and the European Union. To suggest more countries or more links, or if you have further questions, email us at

Do you have any experiences with BHD related life or health insurance issues in your country that you would like to share? Why not post your story on our Forum and discuss it with other members of


Health Insurance

Health insurance premiums in Australia are set at the same rate for everyone, regardless of family history. Age is the only factor which may have an effect on premium rates.

It is however legal for life insurers to ask about your family medical history and any genetic tests you or a family member may have had. Life insurers are permitted to raise premiums or even refuse a policy depending on their evaluation of your risk. It is obligatory that you disclose all information honestly and to the best of your knowledge when applying for a life insurance policy, otherwise the policy may be voided.

No insurer can require you to undergo genetic testing.

Health insurance links and information from the Australian government

European Union

Health Insurance

Healthcare plans and insurance options vary by member state, though there are EU-wide regulations on the provision of healthcare.

United States

Health Insurance

It can be useful to keep track of all your medical records. You may already have a system in place; if not, you may find it helpful to organise and file all your bills, records of payment, health insurance claims, and letters explaining health insurance reimbursements. You could also consider saving all filled prescriptions, hospital and clinical bills, and records of contact with your insurance company.

As discussed in the Genetic Discrimination section, The Genetic Information Non-Discrimination Act (GINA) of 2008 makes it illegal for any health insurer to discriminate on the basis of a hereditary disease. It is now illegal in the US for an insurance company:

  • To ask, require or use a genetic test to evaluate you as a client
  • To consider family history and/or genetic test result as a pre-existing condition
  • To deny or raise premiums because of your family history or genetic test.

However, GINA only protects the use of genetic testing results. If you have a hereditary syndrome that may lead to long term healthcare expenses, it can be important, if possible, for you to keep uninterrupted health insurance coverage. As soon as you show symptoms of BHD syndrome (e.g. a pneumothorax), insurers are free to raise your premiums. For example, if you have had treatment for multiple pneumothoraces and decide to change insurers, your premiums might increase.

If you have lost your job, there is a health plan called COBRA administered by the U.S. Department of Labor.

Life Insurance

GINA only covers health insurance. Therefore, it may be useful to look into life insurance options as early as possible if you are considering obtaining a plan.


  • The American Cancer Society offers comprehensive information on financial matters. Although it is specifically directed towards cancer patients, all BHD patients in the U.S. will find the information useful for an overview of healthcare options.
  • The National Cancer Institute provides information regarding contacts for financial assistance applications for cancer patients, and insurance coverage for clinical trials.
  • The American Association for Cancer Research provides contacts for financial assistance applications.
  • MedlinePlus offers a guide to financial assistance.
  • The U.S. Department of Labor offers general information regarding health plans.