Expand at-home health testing to cover HHT
Expand at-home health testing to cover HHT
The Issue
A simple DNA test can help our friends and families live longer! HHT is a genetic disorder that causes abnormal blood vessel formation that results in nosebleeds, aneurysms, hemoptysis (coughing up blood), and more. The abnormal blood vessels can happen in the brain, heart, liver, on the skin, or anywhere in the body, and can sometimes instantly kill a person when the vessel pops. Each child of a carrier has a 50% chance of receiving the gene and therefore developing HHT.
This petition is to request 23andMe and Veritas Genetics to expand its health testing to cover HHT. Veritas and 23andMe already test for health conditions when it runs its DNA tests and expanding its health tests to include HHT will positively impact so many lives. Increased awareness and an earlier diagnosis will allow individuals to get proper care. HHT often goes undiagnosed because the fatigue, nosebleeds, headaches, digestive bleeding and other symptoms are regularly misdiagnosed as other conditions and many doctors are not well informed of HHT. Thus, HHT is known to be underdiagnosed and it's difficult to determine the true frequency of HHT in the population.
Yet, genetic testing has shown to identify HHT accurately. 23andMe uses microarray genotyping but with the decreased cost of superior NGS chips and competition from Veritas Genetics, it is time for 23andMe to upgrade its chips again to include more complete genome sequencing allowing for HHT detection. Both companies profit from customers, researchers, and pharmaceutical companies. The cost of more complete genome sequencing benefits all three components and upgrading the genetics chips is still profitable for the company. Offering HHT testing will make it the only company to offer direct-to-consumer testing and especially to those without health insurance. Furthermore, the genetics around HHT already have a good foundational knowledge base making the test seamless for the company to integrate. This is a win for everyone.
Help save lives, sign this petition :)
Resources: https://curehht.org/understanding-hht/diagnosis-treatment/genetic-testing-hht
https://www.23andme.com
https://www.veritasgenetics.com
786
The Issue
A simple DNA test can help our friends and families live longer! HHT is a genetic disorder that causes abnormal blood vessel formation that results in nosebleeds, aneurysms, hemoptysis (coughing up blood), and more. The abnormal blood vessels can happen in the brain, heart, liver, on the skin, or anywhere in the body, and can sometimes instantly kill a person when the vessel pops. Each child of a carrier has a 50% chance of receiving the gene and therefore developing HHT.
This petition is to request 23andMe and Veritas Genetics to expand its health testing to cover HHT. Veritas and 23andMe already test for health conditions when it runs its DNA tests and expanding its health tests to include HHT will positively impact so many lives. Increased awareness and an earlier diagnosis will allow individuals to get proper care. HHT often goes undiagnosed because the fatigue, nosebleeds, headaches, digestive bleeding and other symptoms are regularly misdiagnosed as other conditions and many doctors are not well informed of HHT. Thus, HHT is known to be underdiagnosed and it's difficult to determine the true frequency of HHT in the population.
Yet, genetic testing has shown to identify HHT accurately. 23andMe uses microarray genotyping but with the decreased cost of superior NGS chips and competition from Veritas Genetics, it is time for 23andMe to upgrade its chips again to include more complete genome sequencing allowing for HHT detection. Both companies profit from customers, researchers, and pharmaceutical companies. The cost of more complete genome sequencing benefits all three components and upgrading the genetics chips is still profitable for the company. Offering HHT testing will make it the only company to offer direct-to-consumer testing and especially to those without health insurance. Furthermore, the genetics around HHT already have a good foundational knowledge base making the test seamless for the company to integrate. This is a win for everyone.
Help save lives, sign this petition :)
Resources: https://curehht.org/understanding-hht/diagnosis-treatment/genetic-testing-hht
https://www.23andme.com
https://www.veritasgenetics.com
786
The Decision Makers
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Petition created on October 25, 2019