This is an open letter to the U.S. trial Parkinson’s participants using GDNF (glial derived neurotrophic factor), sponsored by Amgen. As patients and caregivers, we are advocates finding better treatments for Parkinson’s disease (PD).
We rejoiced with you when after only a few months GDNF treatment, it made a world of difference in your quality of life. One patient described her results as “phenomenal.” Our hearts go out to you as we learned this trial was abruptly halted and your debilitating symptoms returned.
We feel your pain, disappointment, and hopelessness. An awareness campaign has been launched with some national PD organizations joining us. Numerous letters and phone calls made and petitions signed, begging Amgen to reinstate the GDNF. You, as participants, risked having holes drilled in your skulls and pumps inserted in your stomachs, and are still willing to waive legal rights. Only those living with Parkinson’s can understand such a compromise.
One UK patient died of a heart attack, and an autopsy report escalated our efforts. For the first time ever, neural regrowth was found where GDNF had been administered. What hope this brings to all of us! But the answer from Amgen is still an adamant “no,” even after FDA’s OK, a possible flawed study, and patients’ legal action.
Can trust between participants and sponsoring pharmaceutical companies ever be restored in the clinical trial recruitment process? Will improvement or even a cure for other neurological disorders using GDNF be denied hope? More importantly, where is the compassion for YOU, the already suffering patients, in denying a treatment showing radical improvement? We may not win a legal battle, but we WILL tell our story until someone listens.