BIO GUIDING PRINCIPLES FOR
INTERACTION WITH PATIENTADVOCACY ORGANIZATIONSBIO member companies are committed to investing in,discovering, and developing innovative medicines to cure ortreat disease and improve the lives of patients. BIO and its
members recognize that it is of the utmost importance tounderstand and consider on an ongoing basis the needs andpreferences of the patients we serve. To ensure BIO andits members understand and can thoughtfully address whatis most important to patients, their caregivers, and theirfamilies, we meaningfully, ethically, and responsibly engage
with patient advocacy organizations.
Patient advocacy organizations are typically non-profit entities
that advocate for and support the needs of patients andcaregivers. These organizations are most closely connected
to and can best communicate the perspectives, values, anddesires of the constituencies that they represent. Patientadvocacy organizations are uniquely positioned to help raiseawareness and overcome stigma of medical conditions,provide support and disease education to patients andcaregivers, drive the development of new medicines forpatients, and advocate for policies that sustain medical
innovation and ensure patient access to novel therapies.
The following guiding principles for interaction with patientadvocacy organizations are intended to inform BIO member
companies as they engage and continue to develop
partnerships with the patient advocacy community. These
principles are based in large part on certain well-informed
existing company practices, as well as patient advocacy
organizations’ own perspectives on working with industry toachieve goals that are most closely aligned with the interestsof the patients they represent. This document is not intended
to establish any binding standards or supplant any legal orother requirements that may apply to such interactions;rather, it is intended to reach beyond legal requirements toprovide an ethical framework for members of our industry as
they collaborate with patient advocacy organizations. Eachpatient advocacy organization, as well as BIO and its member
companies, will abide by its own guidance.

FOSTERING PARTNERSHIP AND VALUINGINDEPENDENCE
Partnerships between BIO member companies and the patientcommunity should be based on our shared objectives ofdeveloping and ensuring access to treatments that improve
patient health outcomes. To that end, BIO and its member
companies value and embrace the autonomy of patientadvocacy organizations and recognize the importanceof their maintained integrity to ensure that they are an
independent and trusted voice of patients. We encourage
this and recognize that partners in the patient community
independently develop public policy and scientific agendas.
These may, in some cases, differ from those of BIO and its
members but should not impact the relationship between thepatient advocacy organization and BIO or its members.
BIO member companies should not attempt to compel astakeholder in the patient advocacy community to adopt a
specific policy position.

ADVOCATING FOR POLICIES THAT IMPROVE
PATIENT OUTCOMES
Partnerships between industry and patient advocacy
organizations may provide opportunities to better understandthe complexities of patients’ healthcare journeys, their
expected outcomes, and the challenges they face enhancing,supporting, and promoting the patient voice. BIO members
and patient advocacy organizations work together tocommunicate these needs and experiences and look for sharedsolutions for patients and their families.
These collaborations often result in improved public policies
around disease education, awareness, patient access totreatments, clinical research, and, ultimately, improved healthoutcomes.
When collaborating on shared policy objectives, BIO, itsmembers, and the patient advocacy community should work
together as equal partners.

SUPPORTING PATIENT ADVOCACYORGANIZATIONSBIO and its members, at times, provide financial support*
to patient advocacy organizations to support activities which
may advance our shared goals of bringing new treatments
to patients faster by speeding the pace of innovation,increasing disease awareness, and advancing patient-focused
public policies. In some cases, organizations may apply foror choose to utilize industry-provided resources to deliverpatient support services administered by patient advocacy
organizations, such as peer support programs, awarenessevents, online forums, and informational brochures. The
objective, scope, and deliverables of any collaboration shouldbe transparent and ethical.
*Financial support may include, but is not limited to, sponsorships, grants, donations, andcharitable contributions.

BIO and its members should not dictate that a patient advocacy
organization receive funding solely from one entity. While there
may be circumstances in which a single entity is the sole sourceof support, patient advocacy organizations are encouraged toidentify, when possible, multiple sources of financial support.
Further, financial support provided by BIO member companies
should strengthen the mission and should not influence thedevelopment of a patient organization’s public policy positions,nor should a financial contribution be intended or expected to
do so.
BIO recognizes the importance of transparency and its role indeveloping trust-based relationships with stakeholders, thepublic, and the patient advocacy community.

VALUING THE PRIVACY OF THE PATIENTCOMMUNITY
BIO and its members respect the privacy of data that may
be received or collected from patient advocacy organizations.
There is no expectation that personal patient or family
information will be shared with BIO or its members.

RESPECTING STANDARDS OF ETHICAL CONDUCTBIO and its members believe that individual patients andtheir health care providers are best equipped to choose theappropriate course of treatment in order to achieve the best
possible outcome. To that end, BIO and its members should not
expect promotion or endorsement of a specific product whenpartnering with or providing financial or other support to apartner in the patient advocacy community.

BIOTECHNOLOGYINNOVATIONORGANIZATION

1201 Maryland Ave., SW
Ste. 900
Washington, D.C. 20024
202.962.9200 (p)bio.org