AUSTIN, Texas - The winter storms brought much to a standstill, and for those who rely on daily medications or daily use of medical equipment, it may have been a life or death situation.
Houston resident Lora Taylor’s adult daughter Julie has a serious respiratory condition as well as a severe form of epilepsy. Because of the equipment she relies on, she has signed up with STEAR, or the State of Texas Emergency Assistance Registry.
"My understanding of that was in the event of an emergency that they would let the provider know this is a house that does need to have power," said Taylor.
However, the Taylors lost power for two straight days last week. Julie was unable to use her nebulizer, and they had to use a backup battery for her cough assist machine.
Her suction machine, Julie’s most vital device according to Lora, had a car charger, which kept them running back and forth. Then, a pipe in Julie’s room broke, causing flooding and no water for five days.
"To be without water with a child you’re trying to give medications to, you’re tube feeding, trying to wash your hands…that was really stressful," said Taylor.
Julie’s story is just one of others statewide -- others with disabilities that had to weather the storm, like ten-year-old Max in Cedar Park who has four major medical diagnoses and takes CBD for seizures.
"For kids like Max and many with medical needs, those added disruptions to their lives and routines can be particularly difficult," said mother Carissa Barenblat. "One thing I was worried about -- not just do we have the standard dose, but do we have those emergency doses."
Thankfully, they got by. 11-year-old Jack in East Austin almost didn’t. He has epilepsy caused by tuberous sclerosis complex.
"We ended up getting really lucky and the day they opened up I had given him the last dose the night before," said mother Sheryl Kubala. "If he went without it, he wouldn’t sleep, his seizure threshold would be lowered, which means it would increase and his anxiety would increase."
For Jack, Max, and their families, power outages weren’t so much the issue but the roads.
They both have qualified for the Compassionate Use Program and get their medication from Texas Original Compassionate Cultivation in Manchaca, one of only three licensed companies of its kind in the state. It serves patients with a variety of conditions including epilepsy, ALS and Parkinson’s Disease
Under state law, Texas medical marijuana dispensaries are restricted from storing inventory at locations across the state even though they serve patients all over Texas. That meant many of their patients faced rationing or going without their medication because product was stuck in one central location due to road conditions.
"Even on the best of days it’s a challenge for us to get the medicine from our facility into the hands of our patients," said Morris Denton, CEO of TOCC. "You start to see the cracks in the regulations when you have a big winter event like we had."
Some of the changes the families are now pushing for include easier access to these potentially vital medications.
"The fact that we can’t have distribution centers in high-density areas is a barrier for us," said Barenblat. "This (storm) was a particularly difficult challenge that just highlighted this difficulty."
They’re also asking for more priority to be given to the most vulnerable during weather events like the one Texas saw last week.
"We have to develop a safety net so that if they’re dependent on medical equipment to stay alive there’s something that can be done to restore that power," said Taylor. "We now know you can’t always evacuate, and there is no cavalry to count on."