Julia Patterson was a rockstar advocate for medical cannabis during the 2019 legislative session. Her testimony was—and still is—incredibly powerful and was pivotal in shaping the ultimate expansion of the Compassionate Use Program (CUP) in 2019.
Now, Julia is back. And not only is she advocating for a deeper expansion of the CUP, she has allied herself with KK125 Ovarian Cancer Research Foundation as one of the state’s youngest registered lobbyists to advocate for insurance coverage of fertility preservation services for young adult cancer patients and the freedom to share information related to “off-label” medication use. She wants to represent those facing unimaginable health challenges and help them get the relief they need…just like she did through the expansion of the CUP. “Rockstar” doesn’t even begin to describe her.
Julia is just 18 and heading into her second semester of her freshman year at Texas A&M University in College Station. Nearly three, seizure-free years into her medical marijuana treatment, Julia is living the life she and her family always wanted and is working to give that opportunity to the millions of other patients seeking treatment throughout Texas.
TOCC stands behind Julia in advocating for the expansion of the Compassionate Use Program.
“We can no longer move at an incremental pace when discussing the CUP’s expansion,” said Morris Denton, our CEO. “Our citizens’ health and safety are crucial to our state’s economy. We are fighting for the patients who have been left behind and their doctors who have been disenfranchised by the CUP’s arbitrary constraints. We’re proud to stand by Julia and advocate for a broader, more inclusive medical marijuana program that will change millions of Texans’ lives for the better.”
Read more about what Julia is fighting for in the below announcement from KK125.
18-Year-Old Medical Marijuana Patient to Serve as KK125 Ovarian Cancer Research Foundation Lobbyist for 2021 Texas Legislative Session
Julia Patterson, an epilepsy survivor, will advocate for expansion of Texas’ Compassionate Use Program, insurance coverage of fertility preservation for young cancer patients, and information sharing for the use of off-label medications.
AUSTIN, TEXAS—KK125 Ovarian Cancer Research Foundation announced today that Julia Patterson, 18, an epilepsy survivor and over three-year patient of medical marijuana, will serve the nonprofit organization as one of the youngest registered lobbyists in Texas for the 2021 legislative session, advocating for expansion of Texas’ Compassionate Use Program (CUP), insurance coverage of fertility preservation services for young adult cancer patients, and the freedom to share information related to “off-label” medication use.
Patterson, a native of Round Top, Texas, is a freshman at Texas A&M University in College Station. Suffering from intractable epilepsy since kindergarten, Patterson brings an informed perspective to her patient advocacy efforts.
“I was having more than 200 seizures a day,” Patterson recalls. “Drugs and implants left me in a fog, and it was hard to function. I couldn’t go to school, drive a car, or live a normal life. Everything changed when I was able to access the right medication — medical marijuana. Every Texan whose medical condition can be improved by a prescription for medical marijuana should have the ability to access it. The state shouldn’t place limits on who is entitled to compassion.”
Since beginning her medical marijuana treatment, Patterson has been almost seizure-free for three years, received her driver’s license, graduated as the valedictorian of her high school class, and was accepted into the University Honors Program at Texas A&M University.
Following the passage of the Compassionate Use Act in 2015, qualifying epileptic patients in Texas were able to obtain prescriptions for medical marijuana to treat seizures and other symptoms of epilepsy. Dr. Karen Keough, a board-certified pediatric neurologist who specializes in treating intractable epilepsy at Child Neurology Consultants of Austin and serves as Chief Medical Officer of Texas Original Compassionate Cultivation (TOCC), one of a small number of state-approved medical marijuana growers and dispensers in Texas, took advantage of the new law to prescribe medical marijuana for Patterson.
"When Julia started medical cannabis in January 2018 she had tried and failed many seizure medications, brain surgery and an epilepsy diet,” said Dr. Keough. “She still had major seizures a few times a year, and EEGs showed many electrical seizures happening every day without outward symptoms. After medical cannabis, her EEG completely normalized and she had no clinical seizures whatsoever for almost two years. She is now living the life she & her family have always dreamed of.”
Following her personal success with medical marijuana, at the age of sixteen, Patterson testified before the House Public Health Committee and Senate Health and Human Services Committee in support of expanding Texas’ Compassionate Use Program.
This year, Patterson will advocate for changes to the Compassionate Use Program in Texas to include:
- Removing restrictions on qualifying conditions: Put the power to prescribe life-changing medicine into doctors’ hands.
- Eliminating the THC cap: Optimizing cannabinoid levels for various symptoms will ensure more patients get the relief they need without suffering unnecessary side effects.
Patterson will also advocate on behalf of young cancer patients whose fertility is compromised by treatments such as chemotherapy, surgery and radiation. The Medically Necessary Fertility Preservation Act will protect the option of biological parenthood for these patients by ensuring insurance coverage for fertility preservation services, such as egg and sperm banking, the high cost of which can sometimes be unaffordable to a person also facing a cancer battle.
“It’s understandably daunting when a person is diagnosed with cancer and simultaneously faces making life-altering decisions about whether they have the resources to preserve their ability to have a biological family in the future,” said Patterson. “There is usually a short window of time for a patient in this situation to make such a significant decision, and if we can alleviate the heaviness of the financial burden associated, we owe that to these young patients.”
This session, Patterson will also encourage lawmakers to adopt the Truth in Medicine Act that will allow the open sharing of information related to “off-label” use of medications in Texas. The federal Food and Drug Administration (FDA) is responsible for approving medications, but often a medicine approved for one purpose is also effective for treating other ailments. In fact, about one-fifth of prescriptions written annually are legally prescribed for purposes, patient populations, or dosages different from what the FDA originally approved. This is called an “off-label” use, and while it is entirely legal for doctors to prescribe medicines this way, the FDA largely forbids drug manufacturers from sharing truthful information about those “off-label” uses with doctors and insurance companies, which can affect treatment and coverage decisions.
“Full access to truthful healthcare information that could lead to promising treatment options is crucial, especially in treating patients with rare diseases or conditions,” said Patterson. “Texas can and should lift restrictions on pharmaceutical companies so that they can share fact-based ‘off-label’ use data —empowering doctors and patients to pursue personalized treatment options that show the most promise for each individual patient.”
About KK125 Ovarian Research Foundation
The KK125 Ovarian Cancer Research Foundation is a Texas-based nonprofit focused on removing medical obstacles and ensuring access to safe and promising therapies for patients with terminal or severe and chronic illnesses, reforming compassionate use, and promoting the early detection of and advancing treatments and cures for ovarian cancer. KK125 OCRF has played a key role in the passage of state and federal Right to Try legislation as well ensuring that the CA125 blood test that can detect the presence of ovarian cancer is covered by insurance as part of a woman’s Annual Well Woman Exam.
