IDF Efforts to Promote SCID Newborn Screening in Arizona

Rachael Pirie, mother of a child with SCID, meets Arizona Governor Doug Ducey, February 8, 2017, to advocate for SCID Newborn Screening in the state.
Rachael Pirie, mother of a child with SCID, meets Arizona Governor Doug Ducey, February 8, 2017, to advocate for SCID Newborn Screening in the state.

IDF has made great strides toward implementing newborn screening for Severe Combined Immune Deficiency (SCID) in Arizona. The combined efforts of IDF, the SCID, Angels for Life Foundation and dedicated volunteers have proved to be so successful that we anticipate legislation will be enacted and Governor Doug Ducey’s budget will be approved to enable SCID screening to be implemented in Arizona by the end of the legislative session in April.

The work completed in Arizona is a highlight of IDF’s public policy advocacy efforts over the past several months.

October 2016
The Arizona Department of Health, funded through a grant provided by the Association of Public Health Labs (APHL), organized a SCID awareness week in Arizona. Events of the week of October 17-21, included presentations to physician groups in Flagstaff, Phoenix and Tucson by SCID experts and IDF Medical Advisory Committee members, Drs. Rebecca Buckley and Jennifer Puck as well as local medical experts. In addition, IDF advocacy staff, SCID, Angels for Life Foundation and local families affected by SCID were invited to present in Phoenix.

As part of these activities, IDF worked with Arizona families who have been affected by SCID to tell their stories for awareness week and to share with the Governor’s office and legislators. Also while in Phoenix that week, IDF staff educated advocates and government officials on the need for SCID screening. IDF, in conjunction with March of Dimes, held several high level meetings with members of Governor Ducey’s administration including his Chief of Staff, his Health Policy Advisor, Assistant Director of Policy and Intergovernmental Affairs at Arizona Department of Health Services and Bureau Chief of the Arizona State Lab.

At the meetings, IDF staff shared the need for SCID screening and discussed how this could be done by raising the statutory cap on the newborn screening fee. At these meetings, the Governor’s office appeared receptive to our suggestions, and recommended continued contact with their office. IDF staff remained in contact with those members of the Governor’s administration in the following months.

January 9, 2017
In response to our efforts and to our surprise, Governor Ducey included his support of for SCID screening in his annual state-of-the-state address to the legislature and citizens of Arizona. His address included the following:

“When it comes to our children, we will always be tireless advocates. Every year, babies across the country are born with Severe Combined Immune Deficiency – SCID. It’s a rare genetic disorder that if not detected and treated early, is deadly. A baby born in Arizona today is automatically screened for a number of diseases – but not for SCID. Let’s change that, by adding SCID to the list. We have the power to save these precious human lives. So let’s act with urgency.

The excerpt of his address can be viewed here: http://azgovernor.gov/governor/video/saving-infant-lives-scid

January 13
The Governor’s Budget was released which included an increase of $513,000 to fund SCID testing and a six dollar increase in the newborn screening fee from $30 to $36.

January 31
Senator Sylvia Allen introduced legislation SB 1368, in coordination with the Governor’s office, to raise the newborn screening fee in order to implement SCID screening and a hearing scheduled for February 8.

February 7
IDF sent an alert to Arizona families to contact state legislators in support of SB 1368. Over 500 emails were sent to Arizona state legislators.

Families affected by SCID, volunteers and IDF staff met with Arizona Governor Doug Ducey, February 8, 2017.
Families affected by SCID, volunteers and IDF staff met with Arizona Governor Doug Ducey, February 8, 2017.

February 8
IDF staff again traveled to Arizona with SCID materials and buttons in hand to testify with SCID families before a Senate committee and to meet with the Governor in support of SCID screening.

  • Governor Ducey met with families affected by SCID to hear their stories and be photographed with the group.
  • IDF brought the families to March of Dimes Capitol day to join with them to support SB 1368.
  • IDF met with families and legislative leaders to support the bill.
  • Mothers of children with SCID, Rachel Pirie and Alethea Brown, testified on behalf of IDF and the SCID, Angels for Life Foundation in support of the legislation.

The committee voted positively on the bill and sent it on to the next step toward approval.

Because of these efforts, several news articles were published related to SCID screening in Arizona and the Governor’s support.

February 20
The Senate voted in favor of the bill and it is now awaiting action in the House.

The final decision regarding SCID screening will be determined when the budget passes in mid-April. Because the Governor has supported this and the legislature is the same party, it is likely that this will pass this year.
IDF continues to advocate for SCID screening throughout the legislative and budget processes.

Want to get make your voice heard? Click here to sign up for IDF Action Alerts. We will send you notifications when we need you to contact your representatives on behalf of the PI community.