BY JENNIFER AHLSTROM Mexico had its first ever forum on "Invisible Cancers" featuring multiple myeloma and Myelodysplastic Syndromes (MDS). Thanks to Celgene Corporation, Jenny Ahlstrom, founder of the Myeloma Crowd, was invited to share her story about what it was like to be diagnosed in Mexico with this rare blood cancer. The purposed of the forum was to bring attention to a cancer that affects approximately 10,000 people per year in the country. This is a little understood disease in the country and little information is published in Spanish, either in written materials or online about the disease. Cancer care in Mexico is particularly difficult because there are 4-5 groups of governmental healthcare providers. For example, all state employees have specific providers (with associated insurers) while government-owned corporations like Pemex provide their own care and insurance. In fact, private practice only accounts for a very small percentage (1-2%) of care. Add to this the economic difficulties of many patients in Mexico and you have a very challenging time providing the most up-to-date care possible, especially for a rare blood cancer like multiple myeloma. Many individuals have great difficulty traveling to the clinics and can lose their employment if they take time off regularly for cancer treatment. The forum was held at the Mexican Senate and brought together Senators, Ministers of Health, cancer advocacy groups, hematologists, stem cell transplant specialists and heads of the main insurer groups to discuss the importance of care for multiple myeloma, to encourage the idea of a national registry and to build consensus around access to myeloma drugs for the poorest segments of the population. The forum's success was in bringing the major stakeholders together for this inaugural and important discussion. Jenny lived in Mexico at the time of her diagnosis and because of treatment challenges, stayed in Utah during her tandem transplants while her family remained in Mexico. She then flew between Houston and Mexico City for a year of maintenance therapy. With great love for the Mexican people, she looks forward to working with the Mexican government to help support the patient community.
about the author
Myeloma survivor, patient advocate, wife, mom of 6. Believer that patients can help accelerate a cure by weighing in and participating in clinical research. Founder of Myeloma Crowd by HealthTree and the HealthTree Foundation.