When you have a panel of patient advocates and an audience of pharmaceutical industry folks, I usually expect there to be a certain amount of tension. But there’s something to be said about the progress that’s been made in pharmaceutical companies recognizing the need to work more closely with patients for their long-term survival. Polycystic Kidney Foundation CEO Jackie Hancock moderated the EyeforPharma discussion, with caregiver advocate Tambre Leighn of 7th Level Wellbeing, Kelly Lange — a metastatic breast cancer patient advocate with METAvivor and Jack Whelan — a cancer survivor and e-patient with Patient Research Advocate.
The conference combined a patient summit with one looking at how pharmaceutical companies are adding “value beyond the pill.”
Although the caregiver and patient experience were a large part of the conversation, it also touched on the stress families experience, particularly the siblings of cancer patients and children with a sick parent, as well as family caregivers.
Collaborate with patient communities Pharmaceutical companies need to reach out to advocacy groups to involve them in clinical trial design. Lange offered up an example such as reducing the number of scans when possible. If the trial designers could talk with these patient communities, they would have a better understanding of what’s involved for them to get to a PET scan, for example. It can involve a full day commitment and they still need to leave time for family commitments. If designers had that insight, it could go a long way in improving patients’ participation in clinical trials.
Patients value pharma, but they want a greater voice To underscore that point about closer relationships, Whelan, who said he has participated in seven clinical trials said, “This is something that is so important: You are in a very noble industry and whatever role you play you have to leave here knowing that patients love you [and the work that you are doing]. He later added: “I believe clinical trials for me have given me great advances on my survival.”
Patients’ needs depends on disease progression Pharmaceutical companies need to know that patients’ mindset changes depending on how they have responded (or not responded) to radiation therapy. The nuances along the continuum of their disease changes, and their perspectives about clinical trials change as well.
Primary care physicians need to be better informed about clinical trials
A Deep-dive Into Specialty Pharma
A specialty drug is a class of prescription medications used to treat complex, chronic or rare medical conditions. Although this classification was originally intended to define the treatment of rare, also termed “orphan” diseases, affecting fewer than 200,000 people in the US, more recently, specialty drugs have emerged as the cornerstone of treatment for chronic and complex diseases such as cancer, autoimmune conditions, diabetes, hepatitis C, and HIV/AIDS.
Support oncology nurses The panelists also shared a great deal about the relationships they have formed with physicians and nurses. Asked who had helped them the most to navigate the health system, Leighn, Lange and Whelan championed the role of oncology nurses. “They are very good at what they do and anything pharma companies can do to make their job easier would be helpful,”said Leighn.
[Photo credit: BigStock Photos]
