With a brand new PhD in geochemistry, I joined an oilfield service company, spending four years on special projects in the company research lab in Connecticut and two years as a geochemist advisor to the operations part of the company in Houston and Dallas. When oilfield drilling activity in the US plummeted, I was laid off, and I found a new position at a small oilfield service company in Boulder, Colorado.
When the Colorado company went out of business, I discovered that the owner had pocketed my personal contributions to the company’s 401K plan, and I started investigating the legal avenues to recover that money. I realized that I could enjoy practicing law to help other people, as long as I wasn’t dealing with situations in which I had a personal emotional involvement. As I looked into applying to law school, I knew I didn’t want to walk away from my technical background and chose to focus on patent law–helping inventors protect their work. While in school, I interned at an oil company, which let me use my oil industry background while working on preparing patent applications and getting them through the U.S. Patent and Trademark Office.
Eventually, I started a small solo law practice. Working in patent law was a great job, getting paid to learn about new technologies from creative and intelligent clients who usually were eager to discuss their inventions, particularly because they had been instructed not to describe their work to colleagues, friends, and family. I retired and closed my law practice in 2015, partly due to frustration with new policies implemented by the Patent and Trademark Office and partly due to health issues.
While living in Boulder, I discovered the sport of ice speed skating and was hooked the first time I tried it. Eventually, that led me to Utah, where I could train at the facility built for the 2002 Olympics. I missed qualifying for the 2002 Olympic Trials by 0.8 seconds in a 5-minute race, thrilled to have skated at that level. I never entertained illusions of qualifying for the U.S. Team.
Sometimes I joke to myself that I collect rare diseases. That started at age 8 with an uncommon skin condition that probably doesn’t qualify as a rare disease. Since then, I was diagnosed with an acoustic neuroma, a benign brain tumor on the nerve that transmits balance signals between the inner ear and the brain. Then, almost by accident, I found out I have a rare and presumably genetic (haven’t been tested yet) immune deficiency, common variable immunodeficiency (CVID), which means my immune system is unable to produce antibodies properly. The result is frequent infections, which for me have fortunately been less severe than for other patients. The lifelong treatment is immune globulin infusions that provide replacement antibodies from plasma donors. More recently, I was diagnosed with a rare type of non-Hodgkin lymphoma. Along the way, I learned a lot about health insurance coverage, particularly when one is faced with an expensive, life-long treatment.
After joining the Immune Deficiency Foundation (IDF), a national patient organization, I started volunteering in several positions, including federal advocacy about issues of concern to the IDF. For about 10 years, I made annual visits to Capitol Hill in Washington to meet with House and Senate staff. We were quite successful in getting Congress to pass bills on a variety of topics, including adding severe combined immunodeficiency (SCID), in which an infant is born without an immune system, to the list of conditions included in newborn screening; obtaining funding to educate parents whose children were diagnosed with SCID through newborn screening; obtaining Medicare funding for home infusions of immune globulin, making infusions simpler and potentially safer for patients and less expensive for Medicare; and stopping an insurance practice that was a predecessor to copay accumulators, in which insurers were canceling coverage for people who received third party assistance for deductibles, copays, and coinsurance. These were nonpartisan issues, and I really enjoyed explaining them to Congressional and Senate staff.
Through IDF, I learned about the efforts of the National Organization for Rare Disorders (NORD) to establish Rare Disease Advisory Councils (RDACs) in every state, and that a bill was pending in the Utah Legislature in 2000. I contacted legislators to ask them to support this bill, which was passed in 2020 and funded in 2021. Then I applied for a position on the RDAC and was appointed as one of the initial members in 2021 and volunteered to participate in the Legislative Work Group of the RDAC, involved in state-level advocacy. I have served as the leader and coleader of that group ever since. It has been quite an education to find out how the
Legislature and state agencies work in Utah. My primary advocacy interests are ensuring patient access to diagnosis and care through health insurance coverage and fostering community participation for rare disease patients.