CJG Blog

Center for Jewish Genetics blog

Washington Update: 21st Century Cures Act

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Washington Update

 21st Century Cures Act: Addressing Health Issues That Touch Almost Every American Life

The legislation known as the 21st Century Cures Act is the result of years of debates over health care policy issues.   This bill which has a $6.3 billion dollar price tag addresses:

  • An increase in funding for research into cancer and other diseases
  • Problems in the nation’s mental health systems
  • Stemming the widespread and intractable problem of opioid drug abuse
  • Potentially far-reaching regulatory changes for drugs and medical devices
  • New funding for the National Institutes of Health and Food and Drug Administration

It is encouraging to see that even in this politically charged environment, Republicans and Democrats have been able to reach a compromise to allow a comprehensive mental health reform bill to pass with major new funding to confront the nation’s opioid  crisis, says Senator Christopher S. Murphy, Democrat of Connecticut. [1]

The bill, which will be voted on in a fast track process in the House on Wednesday is expected to be voted on in the Senate next week.  The OPEN ACT has been removed from the larger Cures bill due to concerns about cost.  According to the EveryLife Foundation for Rare Diseases, this is a missed opportunity to help rare disease patients who could benefit from repurposed treatments through additional support for the pharmaceutical industry.  Advocates will continue to try to gain backing for this legislation in 2017.

To access the New York Times article use the following link:

http://www.nytimes.com/2016/11/28/us/politics/congress-cures-cancer-moonshot-alzheimers.html?emc=edit_th_20161129&nl=todaysheadlines&nlid=41103339

For the full bill and summary use the following link:

https://energycommerce.house.gov/news-center/press-releases/21st-century-cures-bill-released



[1] www.nytimes.com/2016/11/28/us/politics as referenced above

 

Be Thankful For Good Health

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Be Thankful for Good Health

What is the most valuable gift you can leave to your children, grandchildren and great-grandchildren? The gift of good health. November is Family Health History Month – a time for passing important medical information about you and other family members on to the next generation. 

You don’t have to wait until Thanksgiving to get the conversation started!  There are many health conditions that run in families. Knowing your family health history can alert you to the potential risk for a variety of genetic disorders.  Be sure to take a minute to check with your relatives for warning signs and assess your risk for hereditary cancers during this process. Click here for the Norton & Elaine Sarnoff Center for Jewish Genetics’ cancer risk assessment, and feel free to contact the Center with any questions or concerns. 

Gathering Family Health History during the Holidays: Use These Tips for Starting the Conversation

  • The best way to learn about your family health history is to ask questions! Use holidays and other family occasions to gather information from your relatives.
  • It helps to prepare questions ahead of time. Ask them the following: Where were you born? Did you experience any health problems as a child? What habits have you had that could have affected your health (e.g. sun exposure, smoking, physical activity)? Have you experienced any health problems as an adult?
  • Try to record as much information as possible: sex, age, ethnicity, race, chronic or long-term conditions, age of diagnosis, treatments received, and age and cause of death. If possible, include lifestyle information such as diet, occupation, and use of drugs, alcohol, and tobacco.
  • Keep information from both sides of your family: parents, siblings, grandparents, aunts, uncles, nieces, nephews and cousins.  An online tool can help your organize this information and see patterns across generations.

This year, give thanks for the blessing of good health and help yourself by sharing your family health history with your healthcare provider. Be sure that this information is added to your medical records so it can be used to guide shared decisions about care. Help others by participating in research to discover new treatments and advance scientific progress for future generations.

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Continuing Bipartisan Efforts to Ensure a Brighter Future for Rare Disease Patients

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Now that the election is over, rare disease advocates such as the EveryLife Foundation, Global Genes and the National Organization for Rare Disorders (NORD) have an opportunity to help heal the nation by focusing on issues that cut across the political divide. Rare diseases affect patients regardless of their political preferences. It is now up to  all Americans to work together as advocates and partner with elected officials to ensure a brighter future for rare disease patients.

Advocates are well-positioned to have a bipartisan impact in 2016 and beyond. The patient community has generated outstanding momentum to help ensure that 21st Century Cures reaches the President’s desk before time runs out this year. This legislation could be a game-changer for the rare disease community and is an opportunity for f for representative of both parties to unite behind this critical legislation. It is in this spirit that the EveryLife Foundation has partnered with Global Genes and NORD to launch a United Rare Disease Day of Action on Tuesday, November 15th.  

To learn more, please visit our 21st Century Cures Action Center.

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In 2017, rare disease advocates look forward to working with Congress and the Trump Administration to ensure that rare disease patients continue to have a strong voice in Washington, DC.

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We are proud to announce that our Carrier Screening Program is open with our new medical provider Insight Medical Genetics (IMG). Visit our Get Screened page to learn more about our program and how to register!

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Do You Know What's In Your Genes?

What is the most valuable gift you can give to your family? The gift of good health! There are many health conditions that run in families. Knowing your family health history can alert you to the potential risk for a variety of genetic disorders . Be sure to check with your relatives for warning signs and assess your risk for hereditary cancers!

Did you know: Ashkenazi Jews are 10 TIMES more likely to have BRCA mutations, which significantly increases lifetime risks for hereditary cancers, so what does this heightened risk mean for you? Click here to learn more !