In the last month, I have been invited to speak at two highly prestigious events focused on orphan drug development. Both events involved international travel. However, event organizers refused to grant a travel stipend stating “it was not policy”. No reimbursement was discussed (“budgets are tight”). Hotel accommodations were not offered (“there is a fairly decent hotel a few blocks from the venue”). Needless to say, I turned down both offers and sent the organizers letters informing them how their short-sighted policies and practices were not only disrespectful to my knowledge and contribution as a patient leader, but also evidence of a far deeper and more prevalent organizational culture that failed to account for inclusion, access, and disability issues related to organizing and planning events in the rare disease space.

While I have attended many events in my role as an educator and leader, I have to admit I am new to the rare disease space (three years is “new-ish”, right?). However, I am not new to disability, having lived with a rare disease for 32 years and relying on my trusted Zippy power-chair to get me around. I am used to not finding accessible bathrooms, restaurants or even sidewalks, and swashbuckling my way to enforce federally mandated Titles II and III of the Americans with Disabilities Act of 1990 (ADA).

What I was unprepared for was the world of drug development and the onslaught of workshops and conferences that catered more to the able-bodied than the “rare” patient they so eloquently and effortlessly spoke of in their opening keynotes. For instance, at the last conference for orphan drug development I attended, the elevator was out of order so I had to cram myself and my chair into a tiny service elevator located on the other side of the hotel. At another event, I missed the session I flew miles to sit in on because all the hotels in the vicinity of the conference did not have accessible transport.

Yes, I could have decided not to make the venture and simply join in on the webinar. But quite simply, virtual conferences cannot accomplish what in-person conferences can. Communication studies and research on deliberative methods have demonstrated learning and collaboration are better facilitated during two-way exchanges (Rowe & Frewer, 2000; Abelson et al., 2003). Although a speech or presentation can be posted online and viewed by an unlimited number of the people, video and written posts only facilitate one-way communication. For two-way or multi-way communication to occur, online meetings need to happen, allowing attendees to interact and ask questions. However, web conferencing can only accommodate a limited number of people—tens or hundreds of attendees cannot communicate together. Additionally, virtual meetings of any kind cannot ensure attendance.

Conferences are also a way of getting face-to-face interactions with leaders in the rare disease space, and for those just starting off as rare disease advocates, they are a way to gain valuable advice and mentoring. Additionally, they are a way to start collaborations on papers or projects, and to more directly advance your career by finding new positions (Yes, people with disabilities have career aspirations too!) or to build our programs. Conferences are an invaluable resource to rare disease patients beyond just the conference presentations themselves.

Thus, it is important to note the integration of disability, access, and inclusion within organizational practice. The plethora of rare-disease specific events does require an accessible venue, an investment in-staff training to provide an appropriate level of customer service, and networks within the rare disease space and for-profit sectors to capitalize on the potential opportunities rare disease patients bring to a conference as respected partners and collaborators of new drugs.

One way to ensure that disability, access, and inclusive practice are incorporated within event planning is through the linking of human rights to universal design. Universal design provides a frame-work in which to develop inclusive market practices for people of all ages, sizes, and abilities by making products and environments usable without the need for specialist design. Even when state legislation mandates inclusive practices, it has been demonstrated that there have been significant cases of discrimination identified across industries, especially within the rare disease and drug development space. These include, but are not limited to:

• access to events that organizers had booked that were not accessible

• lack of accessible provisions for information including Braille, sign language interpreters, and website accessibility

• staging that was not accessible to people with mobility disabilities

• locations, seating, and sightlines that not did that provide an equality of experience for people with disabilities

• policy on not charging caregivers/attendants to support people with disability

• registration procedures that did not offer an opportunity for people to identify their access requirements

We have been talking about patient-centricity for a while now. Let’s now start talking about what that would actually look like. Event planning needs to recognize that there is a need to understand issues of inclusion and provide direction for operational practice through the development of inclusive and accessible event guides.

For rare disease patients and drug development industry, the challenge is to work in collaboration with the event industry to document, understand, and develop theoretical approaches to an evolving area of experience. With industry and patients working together, there is a tremendous opportunity to place the event industry at the forefront of inclusive practices.

References:

Abelson, J., Forest, P., Eyles, J., Smith, P., Martin, E., and Gauvin, F. (2003). Deliberations about deliberative methods: issues in the design and evaluation of public participation processes. Soc. Sci. Med. 57, 239–251. doi: 10.1016/S0277-9536(02)00343-X

Rowe, G., and Frewer, L. J. (2000). Public participation methods: a framework for evaluation. Sci. Technol. Hum. Values 25, 3–29. doi: 10.1177/016224390002500101