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Jan 8 2024
FDA Approves Genetic Treatments for Sickle Cell Disease

PORTLAND — The Sickle Cell Anemia Foundation of Oregon is excited by the news that two types of gene therapy for sickle cell have been approved by the FDA: Casgevy for “gene editing”, and Lyfgenia for “gene addition”.

The SCDAA has called gene therapy “potentially curative“, though, they warn, not everyone may be “eligible for gene therapy.”

Gene therapy involves a complex series of steps, such as:

  • sampling and treating the patient’s stem cells; 
  • a regime of chemotherapy to kill abnormal cells; 
  • an infusion of the patient’s own cells treated for sickle cell disease.

Patients who undergo such treatments can expect crisis-level episodes to diminish significantly over time as diseased blood cells are naturally replaced by healthy cells.

Candidates for sickle cell gene therapy must be evaluated against the dangerous effects of chemotherapy.

The FDA has approved both Casgevy and Lyfgenia for sickle cell patients ages 12 and up. The treatments are approved for sickle cell phenotypes SS and S-beta-zero.

SCDAA has more information here.

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Feb 22 2023
Oregon House Bill 2927 to Support Individuals Impacted by Sickle Cell Disease

Hello community partners and friends!

We hope this message finds you in good health and spirits.

We are reaching out to community partners and friends to get your support in helping families and individuals in our community who are affected by sickle cell disease. We are writing to request your support in advocating for HB2927- To establish a system of support for individuals impacted by Sickle Cell Disease. Rep. Travis Nelson is the primary sponsor of this bill, and the team at SCAFO has been working with him in crafting this initiative. The House Committee on Behavioral Health and Health Care is holding a hearing on this bill on Wednesday March 1st. Having the committee hear the voices of our community will go a long way in moving this bill forward.

This bill would establish a Statewide Steering Committee on Sickle Cell Disease. Enacting this measure would direct the Oregon Health Authority to devote the attention and resources needed towards understanding and responding to the physical, social, and emotional needs of people affected with sickle cell disease and their families. We have provided a one-page summary for your reference and use. We have also included the full text of the bill for your edification.

Sickle Cell Disease (SCD) is an inherited blood disorder that affects over 100,000 Americans — and millions worldwide. It is one of the most prevalent genetic blood disorders in our country. According to the CDC, approximately 1% of children with SDC will die within the first 3 years of life — often from stroke and without warning. Some two million Americans are carriers of the sickle cell gene. Yet, it has been underfunded and under researched for decades.

The Sickle Cell Anemia Foundation of Oregon is the only statewide non-profit direct service organization focused on the needs of people affected by Sickle Cell Disease for the past 40 years. We serve clients from WA, ID and AK as well, when the need arises. We have been dedicated to educating vulnerable populations, serving people in need, and encouraging testing for the presence of this painful and life-threatening, but treatable disease. We are currently charged with providing support services to families of newborns affected with SCD as part of the newborn screening efforts funded by HRSA.

Here are four ways you can put your support into action:

  1. Agree to support this bill- notify us and allow us to identify you as a supporter (e-mail or text).
  2. Share your organization logo and allow us to use it in identifying community supporters.
  3. Provide written testimony so your voice can be heard directly- you can also submit testimony on behalf of someone else (see below for submitting written testimony).
  4. Pass this information on to others- they may be interested in supporting this effort.

How to submit written testimony

  • Go to: https://olis.oregonlegislature.gov/liz/2023R1/Testimony/HBHHC (select the “House Committee on Behavioral Health and Health Care” if it is not already visible)
  • Select the Meeting Date: 3/1/23
  • Enter your name, e-mail address, and your organization/or city where you live (you can submit testimony on behalf of someone else).
  • Type in your testimony or upload a PDF copy of your testimony
  • If you have any problems or would like us to submit your testimony for you, please contact us (charles@sicklecelloregon.org or marcia@sicklecelloregon.org)

HB 2927- Sickle Cell Committee 2023 – Legislative Text

One Page Promo to SUPPORT HB 2927- Sickle Cell Committee 2023

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