Help us FIGHT for Genetic Testing - the Key to Precision Medicine
What is Precision Medicine?
Precision medicine uses our genetic information to focus medical treatment where it is needed.
Examples are:
- If a 24-year-old has a brother that had colon cancer at the age of 31 and genetic tests shows Lynch syndrome with a MSH2 gene, all family members need to be checked for Lynch syndrome. Anybody in that family positive for Lynch needs to start getting colonoscopies at the age of 21.
- If a person has a heart attack and genetic testing shows their CYP2C19 gene does not function correctly, that means the common blood thinner Plavix (clopidogrel) will not work correctly, increasing their risk for another heart attack or death. They then require different types of heart stents and blood thinners.
- If a person has depression and an abnormal MTHFR or SLC6A4 gene, they may have a problem metabolizing certain antidepressants. Since antidepressants may take a few months to work and some cost over $300 a month, knowing if the medications won’t work properly before you start saves time, money, improves treatment, and may save lives.
- If there is a family history of sudden death in a family and they have been diagnosed with Brugada Syndrome from an abnormal SCN5A gene, family members can be screened for this. If they have the abnormal gene, an implantable defibrillator can be placed to prevent someone dying in their sleep.
Precision medicine improves medical care, saves money, and saves lives.
How common are abnormal genes?
Almost everyone has “abnormal genes”. In fact, 90% of the population has a gene affecting drug metabolism. This either causes a medicine to be metabolized too quickly or too slowly. This can cause medications to be ineffective or too strong.
In the United States:
- 17 million people carry a gene increasing the risk for cancer.
- 3.4 million people have a gene increasing the risk for an abnormal heart rhythm which may be life-threatening.
- 7 million people have genes increasing the risk of kidney failure.
- Over a million people have genes affecting anesthesia, which could be life threatening.
What is the problem with genetic testing?
Unfortunately, insurance companies use genetic testing for precision medicine not to help people, but to make more money. They are using these tests to avoid selling insurance to people with genetic conditions. While Congress passed the Genetic Information Non-discrimination Act (GINA) in 2008 to protect a person's ability to get health insurance at a reasonable cost, this law does not protect for Life, Disability, or Long-Term care insurances. For this reason, many people are getting denied for life insurance because they tested positive for Lynch syndrome or another genetic problem. This can cause financial problems for them or their family.
What can I do?
The best solution for this problem is for congress to expand the scope of GINA to protect all types of insurance. Unfortunately, in the current political climate, this will not happen soon. The next best option is for individual states to pass legislation to protect our rights to get all types of insurance, despite any genetic condition. Currently the only state with protections is Florida. Other states have tried to pass legislation, but the insurance companies have helped tie up bills in committees to prevent this from happening.
To solve this problem it is urgent that your state and federal representatives know that this is an important issue. It affects over 27 million Americans. Insurance companies spend millions of dollars on political races so these laws will not get passed. They are doing this for their own profit motive, not for your benefit or best health. Since insurance companies have been profitable while insuring everybody with and without genetic problems, they will still be profitable if these genetic conditions are known. In fact, knowing about these issues will allow people to live longer and healthier lives.
Please clink on the link below to identify your state and federal senators and representatives. Then call, email, fax, or send a letter to them. The message is simple. Tell them: "They must pass legislation allowing physicians to practice precision medicine without repercussions from the insurance industry. Genetic testing is the key to precision medicine, which saves lives, money, and leads be better health. We must expand GINA to include protection for Life, Disability, Long-Term Care, and all other types of insurances. Please represent the people and not the insurance companies.”