Organizations, Collaborations, and Community Trust

Have any of you had issues with community members:

  1. Not trusting the major organization(s) lobbying for your condition (e.g. American Diabetes Association, American Cancer Society)

  2. Not trusting fellow patients who collaborate with these organizations

  3. Not trusting either patients or organizations who collaborate with pharma

What do you do to allay these fears and build trust?

2 Likes

No I have not or even see much discussion

Not WEGO Health community members, but members of these organizations themselves.

  1. I have been very connected with JDRF and American Diabetes in the past and I find a lot more people lately who do not want to participate in events but would rather donate directly. I myself was a little shocked when I would do events to see how much of a $1500 table donation at a fundraising dinner event actually goes to the organization. The other thing I find is that people trust one more than the other–especially in diabetes. I find people are more favorable of JDRF over ADA and feel JDRF is more innovative, etc so people lean one way or the other.
  2. In the case of diabetes I feel that people do trust these organizations due to their longevity, but feel one is more innovative over another or geared more towards specific age groups. I also feel that people are more likely to donate money towards other groups now like Dexcom or Medtronic who are working on products that are going to benefit them and their care versus large organizations geared towards raising awareness.
  3. There is really no trust when it comes to pharma and the diabetes community. Insulin rates have been sky high for decades and the only inexpensive, affordable insulin doesn’t really work for a lot of diabetics. It has been a long time problem and pharma is trying to respond with the heat on them but some things feel more like bandaids than real solutions.

To ally these fears and build trust I can only support what a person feels. There are so many people utilizing different options for diabetes care depending on their needs and insurance. I support them in their personal journey but overall I feel most diabetics want a more affordable, attainable solution to their care which is something everyone in the community seems to agree on.