'Julian's Law' filed, house resolution approved, but more work to be done

Julian with his dad. (From Facebook/SnuggleJulian)

2/16: This story has been updated to reflect an answer from Vilalba’s office regarding funding for newborn testing.

Julian’s Law, in honor of Julian Kampfschulte will go before the Texas Legislature. If approved it will require newborn testing for the disease that killed an 8-year-old Lake Highlands boy. (His story, here.)

House Bill 1937 was filed Wednesday at the Texas Legislature. It would require obstetricians to add adrenoleukodystrophy, a.k.a. X-ALD, to the list of genetic diseases newborns are screened for, alongside phenylketonuria and hypothyroidism, according to a press release from the office of Representative Jason Villalba (R-Dallas), who represents Lake Highlands and Preston Hollow via house district 114.

As we know from following the Kampfschultes story, “the disease only affects males and if its carrier gene is detected at birth, it can be treated and the carrier can live a completely normal and healthy life. X-ALD is treatable only if caught early, but once the child shows symptoms, the disease has progressed beyond treatment,” notes Villalba’s office.

What does this mean exactly? If you recall from our magazine story, the Texas Newborn Screening Advisory Committee unanimously already had recommended to the Texas Department of State Health Services that ALD testing be added to the state panel. The holdup was that Texas still had not secured funding to screen newborns for adrenoleukodystrophy. I asked Vilalba’s office if passing the bill would mean that funding would be automatically available. The short answer is, no.

Ashley Juergens, his Chief of Staff explains by email:

“Although HB 1937 does not guarantee funding for the testing, it does set that X-ALD must be added in statute. This bill is a tool that will ensure support from the entire Membership of the House, which will couple well with a rider through the Appropriations process to ensure funding for X-ALD testing on the newborn screening panel.”

In addition to filing the bill, the Texas House of Representatives today adjourned in honor of Julian — this, according to a resolution that Julian’s mom calls “a very nice gesture and another personalization, of sorts, of the request [for the law].”

The resolution reads:

WHEREAS, The untimely passing of Julian Kampfschulte of Lake
Highlands on October 6, 2016, at the age of 8, is a tragic loss to
his family and to the community that rallied around him; and
WHEREAS, Julian Kampfschulte was born to Jenna and Kurt
Kampfschulte on August 25, 2008; a bright and fun-loving boy, he
enjoyed drawing, building things out of Legos, playing video games,
and spending time with his sisters, Casey and Quin; and
WHEREAS, Diagnosed with Adrenoleukodystrophy (ALD) when he
was 7 years old, Julian continued to attend White Rock Elementary
School, where he brought out the best in his fellow students with
his warm and affectionate nature; and
WHEREAS, Although his days were far too few, the joy and
vibrance with which Julian Kampfschulte lived his life will serve
to comfort and inspire all who were fortunate enough to know him,
and they will forever hold him close in their hearts; now,
therefore, be it
RESOLVED, That the House of Representatives of the 85th Texas
Legislature hereby pay tribute to the memory of Julian Kampfschulte
and extend deepest condolences to the members of his family and to
his many friends; and, be it further
RESOLVED, That an official copy of this resolution be
prepared for his family and that when the Texas House of
Representatives adjourns this day, it do so in memory of Julian
Kampfschulte.