Our son with cancer needs the interstate medical compact
To read this oped written by Naomi Natale and Michael Casaus in the Santa Fe New Mexican click here.
In October 2021, our beautiful 2-year-old son Sebastián was diagnosed with Stage 4 myoepithelial carcinoma, or MEC, an ultrarare and aggressive cancer that has no proven treatment. Upon admission to University of New Mexico Hospital, we were told his prognosis was poor and he would need to start chemotherapy immediately.
Nobody at the hospital had ever seen a patient with MEC, much less treated this disease. We were being asked to make what felt like impossible medical decisions: What chemo drugs should be used? Should we amputate his hand? Should we try an experimental drug with potential long-term side effects?
Desperate to talk to someone who had experience with this cancer, we did what any parent would do: We frantically contacted doctors who could provide second opinions from the leading cancer centers and hospitals across the country. Then, we ran into a roadblock that seemed unfathomable.
Many out-of-state physicians were willing to give us second opinions if we traveled to their facility. Because our son was on chemo and was severely immunocompromised, our oncologist recommended we avoid crowds and airports, so travel wasn’t an option. They were willing to speak with us via video conference, but when they learned we were in New Mexico, they told us they would not be able to do so. One oncologist in Pennsylvania, who also had a medical license in Texas, would speak with us if we were in Texas. So we drove to El Paso twice to speak with him over Zoom.
As it turns out, New Mexico is not a member of the Interstate Medical Licensure Compact, an agreement that allows participating states to work together to increase access to specialist physicians and expand the use of telemedicine, especially for those in rural communities.
Imagine being desperate parents, unable to take our son on an airplane to get a second opinion in person because of his immunocompromised state and then also being unable to even speak to these oncologists with real expertise over Zoom without traveling to another state.
This year, we have an opportunity to fix this problem by passing legislation that would have New Mexico join 39 other states in the Interstate Medical Licensure Compact.
We are so thankful to state Rep. Marian Matthews and her co-sponsors, Reps. Liz Thomson and Gail Armstrong, and state Sen. Bill O’Neill, for sponsoring House Bill 247 and Senate Bill 67 respectively. These bipartisan bills have the potential to improve access to medical care for so many New Mexican families who need specialized care or expert advice that may not be available where they live and do not have the means or ability to travel to see a provider.
While New Mexico is working hard to attract and retain more doctors, the reality is that second opinions from expert physicians outside of our state’s borders are essential for so many New Mexicans suffering from complex or rare diseases.
One year after his cancer diagnosis, 10 rounds of chemotherapy and six surgeries, Sebastián is still fighting. We are beside him fighting, too. No parent should have to hear the words, “your child has cancer.” And no parent should be denied the expert advice needed to make informed medical decisions about their child’s health.
To learn more about Sebastián’s cancer journey, visit cureMEC.org.