Jenny Parinos and the Fight for XLH Medication in Brazil
Without doses since June, the Paralympic table tennis player reveals the impact of halting high-cost medication for adults.
Paralympic athlete Jenny Parinos shares the challenges caused by the public healthcare suspension of high-cost medication for X-linked hypophosphatemia (XLH). Without her medication since June, the table tennis player is coping with the return of severe chronic pain while advocating for the right to continuous treatment for adults.
Paralympic table tennis player Jenny Parinos has sparked an urgent debate on public health and quality of life: access to treatment for X-linked hypophosphatemia (XLH). After years of living with constant pain caused by this rare genetic condition, the athlete saw her routine radically transformed starting in 2020, when she gained access to medication that acts as an essential regulator to retain calcium and phosphorus in the body. However, recent rulings by Brazilian health authorities and the courts have suspended the supply of the drug for adult patients, reigniting a challenging legal and physical battle.
The impact of treatment and the return of chronic pain
For more than two decades, leg pain was treated by Jenny almost as a natural part of daily life. Upon starting treatment with the new medication in 2020, relief was immediate and life-changing. In children, the drug even prevents the progression of lower-limb bowing; in adults who are fully grown, its main role is to stop chronic pain and restore functional mobility.
With the suspension of deliveries, the contrast in quality of life became unmistakable. The athlete, who received her last dose in June, reported an immediate return of severe discomfort. Even while maintaining intense training routines and taking on new physical challenges, such as road running, Jenny now grapples with finishing sessions with a limp and without adequate pain management.
Cost barriers and legal battles for adults
The justification given by the Ministry of Health and judicial bodies for halting the supply centered on the lack of conclusive long-term studies for its specific use in adults, alongside the fact that it is a recently developed imported drug. Its high cost makes private out-of-pocket funding unattainable for most patients: each monthly dose can cost around R$ 200,000.
Jenny emphasizes that the disease does not stop in adulthood and that bone and mineral loss continues to affect adults throughout their entire lives. Faced with the need to sustain high-performance training and protect her health, the table tennis player has used her platform and sports media coverage to raise awareness for the cause, arguing that the right to live without pain must be guaranteed to everyone diagnosed with the condition.