A Plea to All State of Texas Employees: Please Forward to All Current and Retired Texas Employees!

I am a tenured faculty member at Texas Tech University and I have been diagnosed with Glioblastoma (GBM). GBM is an illness that strikes educated men and women (the majority of those diagnosed are educated white men in their 60’s). Approximately 2-3 people per 100,000 will be diagnosed with GBM in the U.S. and Europe, however, educated and white/Asian people are at slightly higher risk (Dubrow & Darefsky, 2011). GBM is a type of glioma, which strikes 6.7 per 100,000. Brain tumors, in general, strike 21.97 people per 100,000. Some of you or people you know might also be affected by this (I hope this never happens). According to the state of Texas Higher Education Coordinating Board, there are 45 state universities and many other community colleges and technical schools. Although I cannot find a headcount of faculty and staff at these institutions, ERS reports that there are currently 516,565 participants in the group benefits plan. That means approximately 10-15 state employees or dependents will be diagnosed with glioblastoma and 33.5 will be diagnosed with some type of glioma (Hess, Broglio, and Bondy, 2004). Approximately 110 state employees or their dependents will have some type of brain tumor. In general, cancer of some type strikes 25% of the general population.

We have been told at MDA that the best and safest treatment for brain cancer is proton radiation therapy paired with a specialized chemotherapy. However, United Healthcare (the state of Texas insurance provider) has declined to cover this type of therapy. My doctors at MD Anderson are having great success with their patients, some (especially young, healthy people like me) are living for 20-30 years with the recommended treatment. We have learned that ERS (the state’s plan administrator) has restricted proton therapy from coverage, therefore, United Healthcare has no choice but to decline. Both Medicaid/Medicare and Blue Cross/ Blue Shield cover proton therapy. If you are a state of Texas employee, and especially a faculty member at a state institution, we need your help! The rest of this email arms you with a review of the research so that you can help us show the state facts. Please consider putting pressure on ERS and the state of Texas to change their policy on covering proton therapy for the sake of all of us. There are currently other patients at MDA who have already unsuccessfully gone through all appeals with United Healthcare and ERS.

Proton therapy was invented in the early 1950’s and has been in use since the early 1990’s. Vast research has shown that proton therapy is as effective in killing the cancer cells as photon therapy (Fitzek, et al., 1999; Schulz-Ertner and Tsujii, 1997), however, other research shows that photon therapy (traditional radiation) to the brain results in significant IQ reduction, cognitive & intellectual impairment, and other side effects (Saad and Wang, 2014; Kahally, et al., 2013). While photon therapy is considered “standard of care,” which means it is the type of radiation that insurance companies must cover, the research clearly shows that proton therapy is better for protecting healthy tissue (Constable, et al., 1976). Basically, most cells in the body will repair themselves when damaged, however, neurons (brain cells) do not repair themselves and do not regenerate like other cells do without help from stem cell therapy or neuroplasticity, where other neurons start to compensate for the areas damaged. Stem cell therapy is very costly and still early in the research, and neuroplasticity is less likely to happen with age. Thus, once photon therapy damages healthy brain tissue, there are few courses of repair. Losing significant cognitive functioning, especially for a state employee at an institute of higher education, limits our ability to be successful at our jobs and becomes an inefficient use of state funds in the long run. This is a less effective use of our salaries over time, as salary expenses for an impaired vs. unimpaired tenured faculty member far exceed the additional cost of proton therapy. Although proton therapy radiation is in use for various types of cancer, it is far more crucial in brain cancers because proton beams protect the healthy brain tissue. Hence, enhancing quality of life and the ability to continue to work without the need to go on disability or government assistance. The “master policy” for ERS states that proton therapy is never covered. I’d like for them to make an exception for brain tumors given the concerns of cognitive impairment. Now that you are armed with facts, please help state employees and their dependents in my situation (and those who might find themselves in this situation in the future) by contacting the following people/entities to lobby for policy change. Feel free to use any of the text above to help structure your letters if needed.

Please contact the Director of ERS:
Rob Kukla [email protected]

Other State Contacts:
The Chair of the Texas House Committee on Insurance is Representative John Frullo (Lubbock). (806)763-2366; mail letters to 4601 50th Street #216, Lubbock, TX 79414.
The Chair of the Texas House Committee on State Affairs is Representative Byron Cook (Corsicana). 512-463-0730; mail letters to 1400 Congress Ave., Austin, TX 78701.
The Chair of the Texas Senate Committee on State Affairs is Representative Joan Huffman (Houston and surrounding areas). 713-662-3821; mail letters to 6217 Edloe St., Houston, TX 77005.

Works Cited
Constable, Ian J., Michael Goitein, Andreas M. Koehler, and Robert A. Schmidt (1976). “Small-Field Irradiation of Monkey Eye With Protons and Photons.” Radiation Research, v. 65(2), p. 304-314.

Hess, Kenneth R., Kristine R. Broglio, and Melissa L. Bondy (2004). “Adult Glioma Incidence Trends in the United States, 1977-2000).

Dubrow, Robert, and Amy S. Darfsky (2011). “Demographic Variation in Incidence of Adult Glioma by Subtype, United States, 1992-2007.” BMC Center v.11 p. 325.

Fitzek, Markus M., Allan F. Thornton, Jamed D. Rabinov, Michael H. Lev, Francisco S. Pardo, John E. Munzenrider, Paul Okunieff, Marc Bussiere, Ilana Braun, Fred H. Hochberg, Tessa Hedley Whyte, Norbert J. Liebsch, and Griffith R. Harsh (1999). “Accelerated Fractionated Proton/Photon Irradiations to 90 Cobalt Gray Equivalent for Glioblastoma Multiforme: Results of a Phase II Porspective Trial,” Journal of Nuerosurgery v.91(2), p. 251-260.

Kahalley, Lisa, M. Fatih Okcu, M. Douglas Ris, David Grosshans, Arnold Paulino, Murali M. Chintagumpala, Bartlett Moore, Heather Stancel, Robert Wickham, Paras Mehta, Anita Mahajan (2013). “IQ Change Within Three Years of Radiation Therapy in Pediatric Brain Tumor Patients Treated with Proton Radiation Therapy Versus Photon Radiation Therapy.” Presented at the 2013 American Society of Clinical Oncology.

Schulz-Ertner, Daniela and Hirohiko Tsujii (1997). “Particle Radiation Therapy Using Proton and Heavier Ion Beams.” Journal of Clinical Oncology 25(8), p. 953-964.

Saad, Shumaila and Tony J.C. Wang (2014). “Neurocognitive Deficits After Radiation Therapy for Brain Malignancies.” American Journal of Clinical Oncology.