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Public Testimony: NSARC Virtual Meeting

Today I along with other ALD advocates Jesse Torrey and Miranda McAuliffe presented testimony at the New Jersey Newborn Screening Advisory Review Committee (NSARC) virtual meeting. The purpose of the NSARC is to assist the New Jersey Department of Health in reviewing newborn screening policies and procedures and advise the Commissioner of Health on matters affecting newborn bloodspot screening processes in New Jersey. Here is the text of my statement:

My name is Taylor Kane. I am from Mount Laurel, NJ. I am also a carrier of the genetic disease adrenoleukodystrophy, or ALD. I inherited the disease from my father, also named Jack, who died from ALD when I was 5 years old.

When I was 13, I learned that a newborn screening test for ALD had been developed, which, if implemented, could identify males with the disease in time for successful treatment. I wrote a letter to then-Senate president Steve Sweeney and asked him to introduce a bill requiring NJ to screen newborns for ALD, which he did.

The next year, in 2013, then-Governor Chris Christie signed the bill into law. Now, I am 23 years old, and New Jersey is still not screening newborns for ALD. It has been 10 years since the bill was introduced and 9 years since it was signed into law. At the time, New Jersey was the third state in the country to enact an ALD newborn screening law.

For some inexplicable reason, New Jersey has still not begun screening newborns for ALD. In that same time period, 27 other states and the District of Columbia have begun screening newborns for ALD, many during the COVID-19 pandemic. Most states have begun the actual screening within a year or two of passing an ALD newborn screening law. Why has this happened in New Jersey?

I don’t have time to go into every detail, but along with my mom, I met and corresponded with the NJ Newborn Screening Advisory Review Committee numerous times between 2014 and 2017 to find out why New Jersey wasn’t screening newborns for ALD. I was informed several times, in writing, that the advisory committee: did not have sufficient staff to evaluate ALD because (1) the state did not hire any geneticists and there were personnel shortages; (2) the advisory committee members were all volunteers and they were busy doing their full-times jobs; and (3) that the advisory committee could not even gather a sufficient quorum to vote on ALD newborn screening. Nonetheless, we were assured New Jersey would start screening soon.

In 2018, I contacted my representative State Senator Troy Singleton, one of the original co-sponsors of the ALD newborn screening bill, who met with me and representatives from the New Jersey Department of Health regarding the implementation of ALD newborn screening. After touring the newborn screening lab, and seeing specifically the equipment they had available to do the screening test, we were assured by the Department of Health that the screening would begin soon. That was 4 years ago.

Just last month, on April 22, 2022, after emailing the Commissioner of the Department of Health once again, I received yet another letter stating that the Department was still “validating and integrating” the test.

I cannot comprehend how 27 other states can do in a year or two what New Jersey has not been able to do in 9 years. ALD was placed on the Recommended Uniform Screening Panel more than 6 years ago. Every state around us​New York, Pennsylvania, Delawarescreens newborns for ALD.

Infants who are born with the defective ALD gene in any of these states will be detected at birth and likely be able to receive life saving treatment. Not so in New Jersey, where in the 9 years that have passed since the enactment of the law, as the Department of Health itself has estimated, between 45 and 90 children would have been born with ALD and are now at serious risk of finding out too late for any type of successful treatment. Please remember that ALD is a terminal disease without treatment.

Newborn screening is becoming an ever-increasing public health priority. If the structure of our newborn screening implementation does not improve, how will New Jersey possibly keep up? Will these additional diseases added to our state’s newborn screening panel suffer the same fate as ALD, stuck waiting a decade or more for their newborn screening to be implemented?

That is the end of my testimony. Thank you.

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