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Medical Confidentiality

There are many reasons medical confidentiality is important to individuals with Neurofibromatosis (NF) or any long-term health condition, while there may be more issues than these, some of the reasons medical confidentiality is important to any of us with NF; NF1, NF2, or Schwannomatosis (SWN/NF3) because:


  1. Human Rights
  2. Respect
  3. Work
  4. Life Insurance
  5. Health Insurance
  6. Scam/Fraud/Disability

1. Human Rights:

Dignity towards privacy to not share your problems with everyone. If you shared your medical information with a doctor, your doctor would be required to keep your medical information confidential in America under the Health Insurance Portability and Accountability Act (HIPAA).

2. Respect:

You have friends and/or family you might not want to know you have a serious potentially life-threatening illness due to costs and consequences of health problems and treatments necessary. Sometimes it is a matter of who you want to tell and when your ready to tell others about your condition, as well as the full extent you wish to share on how bad your condition might be.

3. Work:

A potential employer might not hire you if they know about your condition. Employers often dislike giving jobs to women who may want children who may require three consecutive months off for pregnancy. The same duration could be a problem for them and productivity for employees with a serious health condition.

If an employer knows an individual has either a child or a spouse with a long-term health condition can also make it difficult to obtain a job.

4. Life Insurance:

There are long-term health condition, including NF that might exclude you from being able ever to get life insurance.

5. Health Insurance:

If your health insurance company finds out, they might decide all your medical issues are part of a preexisting condition and could make it harder for medical bill coverage. Issues may well be extended to family/offspring, even if they have not had any symptom or genetic test.

6. Scam/Fraud/Disability:

If your health condition leaves you at high risk of a disability, your family might be at higher risk for scams or fraud.

Some scam examples might be; 1) people saying they will help you with medical assistance in exchange for small down payment, or 2) requesting details of your home with the risk of theft or worse. Both scam types are often tried against people with NF, and more specifically inability to hear, see, or walk.

To learn about Doctor Patient Confidentiality, what you can expect from your doctors on privacy and Health Insurance Portability and Accountability Act (HIPAA), visit
U.S. Department of Health & Human Services - Health Information Privacy: https://www.hhs.gov/hipaa/index.html

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