Something cannot be fixed if no one knows it’s broken.
As patients, we look far and wide for advances in research and treatments, only to have our hopes dashed by accessibility or the lack of it. Dedicated organizations work tirelessly to address hot-button topics. While it takes courage to share our experiences and show our vulnerabilities, we must do it in order to call attention to the problem and invite future solutions.
PMD Alliance will be seeking additional volunteers to contribute to the Access to & Quality of Care Study. Share your insights on access to treatments—good and bad. We are being offered a seat at the table. We can contribute data to improve medication efficacy, symptom management, and overall patient care. Take the opportunity to be heard, and as a community, we can make a difference.
As a participant in last year’s survey process, I was invited to provide a follow-up interview. I felt comfortable with Sarah, the interviewer. She created a safe environment for sharing in a one-on-one conversation. If I am given the opportunity for a second interview, my two contributions will include the challenges of specialty pharmacies coupled with pharmacy mistakes.
Newer formularies may require specialty pharmacies, which I have found challenging and difficult to navigate. My adventure with one began on June 26th. To date, my care team and I have had 12 phone calls, 2 faxes, and numerous online chats involving insurance providers and pharmacies.
My pre-authorization was initially denied, but additional information provided by my doctor resulted in approval. While I thought I was finally on my way to my new medication, I learned my prescription was sent to the wrong pharmacy. After two more days of phone calls, the prescription was transferred to the correct pharmacy. The lovely representative on the other end of the last phone call asked me if I wanted it labeled “stat.” I laughed and replied, “I started this process on June 26th, and it’s August 9th, so yes, that would be nice.” I am cautiously optimistic.
My second nugget of information is that AI does not write most prescriptions; humans do, and they make mistakes. Check your medication—look at the color, shape, markings, etc. If it looks different – ASK!
My pharmacy once used a .375 mg dosage for 3.75 mg. It was fixed, but only because I noticed the mistake.
Life with Parkinson’s involves realistic expectations and the hope of fewer disappointments. However, it is frustrating. While I can advocate for myself and have the support of my care team, that is not the case for all people with a movement disorder. It shouldn’t be this difficult, period.
One more thought…the person on the other end of the phone did not break the system, nor can they fix it. So, be kind!
