Advocacy

Action

World Sickle Cell Day

June 19, 2017:

World Sickle Cell Day commemorates the day on which the General Assembly of the United Nations officially adopted a resolution recognizing sickle cell disease as a global health concern. Sickle cell disease affects millions of children and adults around the world. Sickle cell disease can be life threatening and is recognized as, in fact, one of the main causes of premature death for children under the age of five in Africa.

In the U.S. sickle cell disease can negatively impact quality of life for both individuals affected and their family members. But individuals with sickle cell disease can thrive, as well, in the face of so many obstacles.

World Sickle Cell Day @ UCSF Benioff Children's Hospital

World Sickle Cell Day @ UCSF Benioff Children’s Hospital of Oakland

AB1488 Update

June 22, 2017:

Thank you to everyone who provided support for the Sickle Cell Bill, AB1488 that made its way to the budget committee of the California Legislature. Funding for AB1488 was unfortunately not approved this session. This bill getting as far as it did was an historic first and did much to raise awareness about sickle cell disease in the state. Moving a sickle cell program forward even without funding, is a step in the right direction. StartFragmentPlease stay tuned for future opportunities for sickle cell advocacy in California. Opportunities will definitely arise and your help will still be needed!

MAY 25, 2017:

The Budget Committee denied the proposed $80 million in funding for sickle cell centers. However, they did approve $17 million in funding. THIS IS NOT BAD — IT IS GOOD. The amount is almost full funding for the first year and the programs can be set up with this amount of funding.

~THE FIGHT IS NOT OVER~

What you can do to help:

Option 1: Send an email message to the Assemblymembers and members of the Budget Committee (list below) with I Support Sickle Cell Bill AB1488 in the subject header

Step 1: Copy and paste the following into an email, adjusting the language depending on if you have sickle cell disease, have a family member with sickle cell disease or are a community supporter

Dear [Assemblymember or Budget Committee member name],

Thank you for your foresight in funding the first year of AB1488. This will set up a system of care for people, like myself, who have sickle cell disease and will improve our quality of life for years to come. Individuals living with sickle cell disease lack the resources we need to receive quality care, and as a result are forced to use emergency rooms and hospitals for needed care. With the budget for the new sickle cell treatment centers, we will not only have a medical home to receive quality care, but will also save the state money over the long haul with reduced emergency department visits and unnecessary hospitalizations.Please continue to support funding for AB1488 throughout the joint legislature budget negotiations.

I appreciate your continued support for persons living with sickle cell disease, and thank you for your service.

Best wishes,

[Your name]

Step 2: AT MINIMUM, send the email to the Legislative Director of each Assemblymember listed below:

Assemblymember

Title

Legislative Director

Email

Phone

Jim Wood

Chair of Health Committee

Liz Snow

liz.snow@asm.ca.gov

(916)319-2002

Philip Y. Ting

Chair of Budget Committee

Anthony Matthews

anthony.matthews@asm.ca.gov

(916)319-2019

Brian Maienschein

Vice Chair of Health Committee

Lance Withmondt

Lance.witmondt@asm.ca.gov

(916)319-2077

Jay Obernolte

Vice Chair of Budget Committee

Teresa Trujillo

Teresa.Trujillo@asm.ca.gov

(916)319-2033

OPTIONAL: If you want to send to more people, locate the contact information of the CA Assemblymembers and full Budget committee under the ‘Documents’ tab

Option 2: Call members of the budget committee

Step 1: Call the phone numbers of the Assemblymembers listed above

Step 2: State why you support AB1488 and why they should support continued funding for StartFragmentpeople living with sickle cell disease

APRIL 2017

Dr. Keith Quirolo, who many of you know, has been successful in drafting and moving forward a bill in the California Legislature to improve sickle cell disease care in the state of California. Assembly Member Tony Thurmond is the sponsor of the bill, AB1488. Support for the bill is needed NOW from people living with sickle cell disease, their families and everyone who cares about them. You are the people that your elected representatives listen to!

We have attached two draft letters that you can send in support of AB1488 to Assembly Member Thurmond and to Assembly Member Dr. Joaquin Arambula. StartFragmentAssembly Member Arambula is the chair of the Appropriations Committee, the committee that decides where funding goes. StartFragmentYou can feel free to revise the letters, just be sure to include your full name and address so that Assembly Members Thurmond and Arambula know what district that you live in. A good way to revise the letters is to add a personal story about how sickle cell disease has affected you or your family member. You can also feel free to call their offices to express your support of the bill.

Assembly Member Tony Thurmond – (510) 286-1400

Assembly Member Dr. Joaquin Arambula – (559) 445-5532

You will also find attached a fact sheet that outlines the need for the bill and how the funding would be used to improve the care of people living with sickle cell disease in California.

This bill is historic! Sickle cell care has not received the needed funding in California so that children and adults with the disease can live longer, healthier lives. Let your voice be heard about this important bill and please feel free to invite your friends and family to support AB1488 as well.

Sincerely

Northern California Comprehensive Sickle Cell Center staff

Contact info for Congressional Black Caucus

2017-06-22T20:06:07+00:00
Sickle Cell Resources Logo

Sickle Cell Care Coordination Initiative Logo

Knowledge and Action

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