Today I had the privilege of attending a meeting with Representative Angel Cruz and his staff, Dr. Rachel Levine (the Physician General of Pennsylvania), and two other state representatives regarding Krabbe and Newborn Screening in Pennsylvania.
Many other Krabbe families had hoped to attend but were unable to do so, and I conveyed that fact to those in the meeting.
Dr. Levine opened the meeting with a recap of all that has happened since Hannah’s Law was passed and also spoke about the meeting yesterday with Dr. Vockley, the governor’s office, Rep. Cruz and his staff, and Dr. Kurtzberg from Duke University by phone.
Dr. Kurtzberg was invaluable yesterday as she filled the group in on her research and her transplant success rate (over 90%). Dr. Vockley expressed the same concerns he had at the April meeting and she refuted all of them, as expected. I was told that Dr. Vockley seemed to be open to changing his mind about Krabbe, so the August NBS meeting should be interesting.
Dr. Levine then looked at me and said she mostly wanted to hear my perspective, as a parent, and gave me the floor. I was surprised but pleased with the opportunity.
I shared with them why we are so passionate about every child being screened for Krabbe, and we had a wonderful discussion about the topic. I answered questions Dr. Levine had and also asked some of my own.
I also mentioned our concern about Pennsylvania’s two-tiered system which doesn’t screen all babies in the state equally. Dr. Levine agrees wholeheartedly about the system being antiquated and in need of reform.
We discussed the misinformation being spread by hospitals (claiming they are screening for Krabbe) and I asked for clarification on what was actually happening.
Dr. Levine stated that if parents in Pennsylvania ask for their child to be tested for Krabbe it will be done.
However, that requires knowledge about the disease, and I told those in attendance that Brennan and I had NO idea that it existed or that we were carriers. How could we have asked?
Rep. Cruz then asked the Dept. of Health to create an educational pamphlet or some similar method of communication to educate parents, obstetricians, and pediatrician about the fact that they have the right to ASK for the Krabbe screening and it will be done. Dr. Levine said that they will bring this to the attention of the Secretary of Health immediately.
While no immediate actions were taken, the discussion was positive and much better than I had anticipated.
Dr. Levine was kind and genuine, and (which she didn’t directly say this) I truly believe that she will do what she can to ensure that Krabbe is added to the mandatory panel in Pennsylvania.
Progress is being made, and we truly hope that Pennsylvania will be the fifth state very soon to automatically test ALL babies for Krabbe!