Patient advocates a small but mighty force at BIO meeting

Patient Advocacy Pavilion at BIO2016

Patient Advocacy Pavilion at BIO2016

A few hundred patient advocates operating from a small sub-section carved out of three cavernous exhibit halls could easily get lost amid the 16,000 scientists and business folks attending the BIO International meeting in San Francisco last week. But their voice was heard as they made great use of the meeting to remind companies developing therapies that they are the end user. They are the reason why the companies exist.

Talking to many advocates representing their constituents from the tiny two-foot by one-foot shelves and a stool they were each given within the advocate zone a couple of consensus points came through. The meeting provided incredibly valuable contacts for the patient advocates, and the attitudes of the companies are changing.

 “We want to make people aware that family caregivers are making care decisions,” said Mark Gibbons of the Caregiver Action Network. “It has been wonderful having companies reach out to us rather than us making cold calls on them.”

Bill Remak of the California Chronic Care Coalition had similar thoughts on the changing attitude, but on a different aspect of the patient-company interface:

 “This has been a very good meeting; we made really good contacts and had great discussions on business models, pricing and making products accessible to patients. The mentality is changing to more concern on patient access.”

We had a lengthy discussion with Sean Elkins, chief science officer, and Allison Moore, CEO, of the Hereditary Neuropathy Foundation. They fight the battle to get therapies to their constituents on two fronts: The battle to get funding for the research as well as the added barrier of working with orphan diseases. They represent folks with Charcot-Marie-Tooth (CMT) disease and a half dozen related neurologic conditions. And while a prevalence of one in 2,500 makes it one of the more common orphan diseases, they have no treatments, and still have a hard time getting some company’s attention.

Allison Moore

Allison Moore and Sean Elkins

As a result, they initiate many research projects themselves with their own donor-derived funds and federal grants. In one effort they developed an assay for whether existing drug compounds could impact the nerves of patients with CMT. They have been testing many existing compounds and finding a few candidate therapies. But Elkins lamented on Twitter that he wished the drug companies would train their exhibit staff better about rare diseases. “When you approach some of them and say you have tested some of their products in an orphan disease they act like a deer in the headlights.”

His colleague, Moore, noted their efforts to take the bull by the horns and bring in the next generation of scientist/business people to tackle their diseases. “The highlight of the meeting for us has been meeting with former academics starting companies who are excited about the prospect of working on something new.”

Moore’s own story highlighted the dedication evident among the advocates at the meeting. She is a patient herself and not just a foundation executive. She worked the meeting so hard that by the third day she had bandages on both legs to cover the blisters from the braces that allow her to walk despite the underlying illness.

Everyone working the patient advocate zone at the meeting seemed pleased to have the chance to make connections that might one day make things a bit better for their constituents. This was the first time attending for the team from the California Chronic Care Coalition and the group’s CEO, Liz Helms, was exuberant in stating their time was well spent:

 “This meeting was over the top valuable; everything we expected and more.”

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2 thoughts on “Patient advocates a small but mighty force at BIO meeting

  1. Thanks for the report- it’s slow, but inevitable: patients and advocates are gaining the attention of academic researchers and companies. Let’s not forget the tremendous influence of people with HIV on government funding for HIV research.
    However, we also need to realize the difference in tactics for influencing conventional pharma drug companies to turn their attention to orphan disease and the uphill battle of advocates for stem cell therapies, which are not being developed in pharma.
    Patient groups like Summit for Stem Cell (http://www.summitforstemcell.org) are taking the development of stem cell therapies into their own hands. Summit advocates are raising donations for development of stem cell therapy for Parkinson’s disease. Parkinson’s disease is not an orphan disease- a million people in the US have the disease. But in spite of Parkinson’s disease being described as a “poster child” for stem cell therapy, it hasn’t yet caught the attention of funding agencies like CIRM.

  2. Pingback: BIO2016 and getting Big Pharma to listen to the patient’s voice.. » Collaborative Chemistry

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