Patients Support Partnerships between Advocacy Groups and Pharmaceutical Companies

In Advocacy, Featured on App, Orphan Drug Congress by Freya Smale

Survey conducted by: Rare Patient Voice

A survey conducted by Rare Patient Voice of over 3,000 US patients and caregivers across several hundred diseases and conditions, found that a majority (55%) are in favor of patient advocacy groups partnering with pharmaceutical or biotechnology companies to develop drugs for medical conditions. Less than 10% are opposed. However, over one-third are not sure.

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Orphan Survey Chart


Many respondents provided reasons for their positions. Some of those supporting partnerships stressed that partnerships can enable drug development to take patient perspectives into account, that it is the best way to obtain funding, that it can accelerate the development of treatments, and that anything that might help obtain a cure or improvement should be tried:

  • “Advocacy groups are more aware of the ups and downs of a patient and can give a better understanding as to what needs to be included in the development of the needed drugs.” Hepatitis C patient
  • “Any help in research, funding, and treating diseases are expensive and impossible without the help of pharmaceutical companies.” Pemphigus patient
  •  “I am in favor of ANYTHING that will help!” Huntington’s caregiver
  • “It might speed up lifesaving treatment.” Turner’s Syndrome caregiver

Those opposed feared loss of independence for the advocacy group, a conflict of interest where profit motive takes priority over patient needs, and simply a feeling that drugs may not be the answer.

  • “Advocacy groups should be separate so they are able to provide a true voice for their members.” Hemophilia P patient
  • “Advocacy groups should remain impartial to treatment options.”  Juvenile Diabetes caregiver
  •  “Because the Big Pharma is out to make money…period!” Multiple Sclerosis patient
  • “I don’t believe drugs are always the answer.” Trisomy X patient

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Those who were unsure saw the benefit of cooperation, but were also concerned about a conflict of interest:

  •  “This can be positive, but it also may feel like the advocacy group is too involved with pharma to really work for what’s best for patients.” Common Variable Immune Deficiency patient
  • “They should be in contact, but they should not be heavily influenced. One is for the patient, the other is for profit.” Hemophilia A patient
  • “There is a very fine line between partnering with a pharma company and in turn becoming an advocate for the drug product – it’s a very tricky situation.” Crohn’s patient
  • “If it were to help the patients I’m for it but I would not want an advocacy group pushing a specific product.” Von Willebrand Disease patient

To gain greater support of their members, advocacy groups looking to partner with biopharmaceutical firms should make sure to communicate the benefits of the partnership to patients. They should also take steps to ensure and demonstrate that the advocacy group, while cooperating, will maintain its independence and will make patients’ needs its priority over promoting a specific treatment.

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The survey also explored other areas of interest to patient advocacy groups and pharmaceutical and biotechnology companies, including:

  • Awareness of advocacy groups
  • Involvement of patients/caregivers in advocacy groups
  • Reasons for lack of involvement
  • Importance of advocacy group function, and how well these functions are performed
  • Perceived success of advocacy/biopharma partnerships

The detailed results are available by disease as well as by advocacy group. Please stop by our booth at the World Orphan Drug Congress in Washington, DC April 20-21.

This online survey of patients and caregivers was conducted among Rare Patient Voice’s panel of patients and caregivers throughout the US from March 15 – April 7, 2017. RPV’s panel is recruited at patient events (conferences, walks, symposia, etc.) as well as from patient referrals. It also included cancer patients and caregivers in the panel, a Peer-to-Peer Site for Cancer Patients, Survivors, and Caregivers.

Rare Patient Voice has conducted over 1400 studies, both quantitative (on line surveys) and qualitative (telephone, webcam, or in-person interviews) for over 200 market research agencies across hundreds of disease categories and has rewarded patients with over $1,000,000 since its founding in 2013.

The company is exhibiting at World Orphan Drug Congress USA 2017 being held April 20-21, 2017 at the Washington Marriott Wardman Park in Washington D.C. Register now to attend and make sure to visit Wes Michael, President at Rare Patient Voice at booth #508 or contact him directly at