A Journey to the Heart of the Bleeding Disorders Community
Charting the future of public relations
Holmes Report

A Journey to the Heart of the Bleeding Disorders Community

Aventis Behring Choice is the first direct-to-consumer service-driven program for the bleeding disorders community. Its creation has allowed Aventis Behring to demonstrate the company’s leadership in the community.

Paul Holmes

Aventis Behring Choice is the first direct-to-consumer service-driven program for the bleeding disorders community.  Its creation has allowed Aventis Behring to demonstrate the company’s leadership in the community, earn recognition for the contributions it has historically made to people affected by bleeding disorders, and most importantly, establish intimate relationships with the people who have untapped power in driving brand decisions and effecting market share.  The success to date, as recognized by senior management, many healthcare professionals, consumers, and even competitors, has brought about a new communications paradigm in the bleeding disorders community worthy of study by marketing professionals working with similar patient communities and (in our humble opinion) worthy of an award.
In the 1980s, the relationship between persons affected by bleeding disorders (e.g., Hemophilia, von Willebrand disease) and pharmaceutical manufacturers was fraught with mistrust.  Viral contaminants were discovered in plasma-based clotting factors – life-saving medications for this patient population.  Unfortunately, viral transmissions from diseases such as HIV and hepatitis were not readily identified and controlled until thousands of people became infected or died.  Although screening technologies were not available in the 1980’s, this community, understandably, began its decades long assault of rage against the pharmaceutical industry. 
In the 1990s, industry began the arduous process of implementing new quality and safety standards to significantly reduce the risk of viral transmission.  However, a new challenge erupted, one that further eroded manufacturers relationships with the bleeding disorders community.  The FDA imposed strict regulations on plants, costing companies hundreds of millions of dollars to both upgrade facilities and contend with temporary closures. This created a drastic product shortage, as well as the evolution of a new “power base” that managed patient access to products.
Homecare companies, often run by people with bleeding disorders, found their niche.  Organized as a “grass roots” response to the perceived deliberate evil of industry, homecare companies began to control the flow of product that did exist.  They also marketed themselves as the only trusted source to take care of families – from reimbursement to ancillary supplies to education. 
The erosion of corporate reputations steadily continued.  Protective of patients and federal funding, the bleeding disorders community rallied around Hemophilia Treatment Centers (HTCs) and the National Hemophilia Foundation (NHF) – demanding that programs, services and products be funneled through these organizations (in essence, complementing homecare companies).  In the vast majority of instances, corporate services and/or funding was accepted, but never publicly acknowledged to the constituents with whom manufacturers were still desperately trying to communicate.  Products became generic commodities and the distance between patients and manufacturers mushroomed.
In September 2000, radical change occurred.  Bayer Corporation, a leading manufacturer of plasma-based therapies, announced the launch of Bayer Direct.  Absent any consultation with thought leaders, healthcare professionals or patient advocacy groups, Bayer Direct was implemented in an effort to “directly” provide products to patients.  Bayer’s “promise” was that the program would allow medication costs to be reduced, thus affording the company better control over product supply. For patients who enrolled in Bayer Direct, the company not only guaranteed access to products, they guaranteed that a reserve inventory would be set aside for each enrolled patient.  Bayer’s bold move to implement a “first come, first served” distribution system resulted in immediate and devastating effects to the company – igniting a wave of community fury not witnessed since the 1980s.
Bayer Direct was described by the NHF as a “discriminatory and manipulative” attempt to control patient access to products through a restrictive distribution system.  In a statement issued by the NHF in September 2000, Bayer Direct was described as a  “classic case of corporate greed.”  News media, including The Wall Street Journal, reported that all funds the NHF received from Bayer were being returned in protest.  In another “first,” NHF also prohibited Bayer from its annual meeting in November 2000 – the largest yearly gathering of healthcare professionals and patients/families – and  “threatened” that any other company considering selling “direct” to patients would share Bayer’s fate.
What was the problem for Aventis Behring?  One of Aventis Behring’s lead hemophilia products is manufactured by Bayer (both companies sell the same product under different brand names).  Considering Aventis Behring’s source of supply, and given Bayer’s proposed new pricing structure, Aventis Behring was confronted with a major dilemma:  either “go direct” or raise prices to cover costs.
Aventis Behring immediately informed community thought leaders and advocates that they were not going “direct.”  However, two key issues remained: (1) the community thought Aventis Behring was “lying,” and (2) the company needed to take advantage of Bayer’s predicament and gain a competitive branded advantage.  Working closely with senior management of Aventis Behring, Belsito & Company developed and launched Aventis Behring Choice.
Immediate research focused on analysis of Bayer Direct – key messages/positioning by the company; evaluation of the response from the bleeding disorders community; and an assessment of media coverage.  This was followed by a series of in-depth interviews and meetings, hosted by Aventis Behring, with thought leaders and all pivotal third-party groups to seek their guidance and input on the viability of Aventis Behring Choice.   Additional research was conducted among all target audiences six months post-launch to refine program elements and enhance content.  This research revealed five key areas where consumers wanted help with and felt their needs were not being met 1) Family dynamics; 2) Networking with others affected by bleeding disorders; 3) Communicating to people who do not understand bleeding disorders (e.g., ER staff, teachers, daycare workers); 4) Healthcare administration and finance; and 5) Enhancing consumers relationship with their healthcare provider.
In order to rapidly respond to the community, compete commercially, strategically and tactically against Bayer, and launch Aventis Behring Choice at the NHF annual meeting in November 2000, initial planning of the program was limited to 6 weeks.  A team from Belsito & Company worked onsite at Aventis Behring to develop the program, secure support from thought leaders and advocates, e.g., NHF, and create the launch elements.
  • Provide patients and their families with resources and services designed to strengthen their ability to manage the daily challenges of living with a bleeding disorder
  • Foster relationships between the bleeding disorders community and the healthcare professionals best suited to provide comprehensive care – Hemophilia Treatment Center teams
  • Streamline distribution of Aventis Behring products to maintain margin of profitability without limiting patient access to products
Develop meaningful relationships with patients and families through direct and branded communication from Aventis Behring, without alienating healthcare providers
Enroll patients and families in an innovative support program that provides resources and services identified as needed by the community
Differentiate program from Bayer by offering it to all consumers, regardless of product prescribed or source of distribution
Package existing programs and services under one umbrella; initiate new programs that provide true added-value for members and develop an ongoing series of opportunities to build enrollment
The program was launched at the National Hemophilia Foundation Annual Meeting in November 2000, where a press release was offered to trade and select business outlets (Note: It was carefully debated and subsequently decided that media outreach be limited given community sensitivities following the launch of Bayer Direct.  Further, Aventis Behring wanted one year of quantifiable results from the program to demonstrate that Aventis Behring set a new standard in successful direct-to-patient communications.  Promotion of the successes is scheduled for 1st Q 2002).
NHF announced support for Aventis Behring Choice in the keynote address and allowed people to enroll in the program at the Aventis Behring booth.  Initial program offerings (which primarily consisted of the array of services and materials Aventis Behring provided, but seldom got recognition for) were packaged in a comprehensive Resource Guide, which Members received two weeks after enrollment. Aventis Behring established preferred distributors for their products (homecare companies), while not requiring Members to utilize them.  Ongoing enrollment quotas for sales representatives and marketing professionals helped further drive enrollment.
Following development of an extensive branding strategy, the program rapidly expanded, including revision of the Resource Guide and the launch of several new programs:
  • Launch of Gettin' in the Game program (workshops to promote safe exercise among teens) to enroll new members
  • Development of new marketing materials (Value of Membership brochure for patients/families; Value of Participation brochure for healthcare professionals)
  • Development of newsletter series (2 completed to date) distributed to all Members, HTCs and NHF Chapters
  • Launch of first Member-only program in August 2001: Quality of Life Patient Grant Program (financial grants for items not covered by insurance)
  • Launch of Arthur B. Kane Memorial Scholarship Fund (scholarships for post-secondary education) in January 2002
Bayer withdraws/revises Bayer Direct program. The New York Times, among others, reported that Aventis Behring “put pressure on Bayer to change its system.”  Bayer Direct – as of October 2001– has only 30-40 patients enrolled.
Approximately 4,000 patients/families enrolled in Aventis Behring Choice as of December 2001
New enrollment from “Member-only” programs (e.g., Quality of Life Patient Grants) running at approximately 50%
Overwhelming community support for Aventis Behring sales and marketing teams generating new entrée for the sales force at notoriously difficult HTCs; coverage of Aventis Behring Choice programs in 80% of community newsletters
Survey responses from Resource Guide running at 30% (Note: According to the Direct Marketing Association an “average” survey response rate is 2%).  Also, Aventis Behring Market Research telephone interviews conducted among Members in October 2001 indicates high satisfaction.
Public relations program budget expanded for 2002 to $2,000,000.00+; with eight new programs scheduled to be launched.
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