The Grass Is Always Greener

By Natalie Brandweiner, Deputy Editor

Astroturfing is a term first used by former US Senator Lloyd Bentsen that has come to be known as the imitating or faking of popular opinion or behavior. Within the pharmaceutical industry, it is the name given to the behind-the-scenes funding of prominent patient representative groups by some pharmaceutical companies, which has been deemed as unethical by the Public Relations Society of America.

“Many Americans place their trust in the groups they believe are representing them, and have limited awareness that a group's agendas and actions may be influenced by its ties to a pharmaceutical company”

Such close-knit relationships between drug companies and patient groups throws the integrity of both parties into question, and may be accused of creating a false grassroots demand for drugs, hence the term. But should the drug firms bear the brunt of all the negative press, or should patient groups be dealt just as much responsibility for accepting their funding?

There are very few patient groups that are transparent about their funding: how much they get and the how they arrived at that figure. Non-profit organizations are not required by law to outline the sources of their funding or how much they may be storing in their kitty. It’s only through careful examination of tax returns and annual reports that detailed figures can be arrived at.

As representatives of those affected by certain diseases, the function of patient groups is to offer support to the American public, with the patients as their primary concern, campaigning for treatments and sitting on advisory committees. Some patient groups are large and powerful, but many patient are small and are subject to the financial and lobbying restrictions placed upon all public charities. For those with little or no lobbying power and only a small membership in tow, there is a perhaps understandable temptation to accept the readily available funds from pharma companies to help fund their activities and prolong their existence.

And why shouldn’t the drug companies seize upon these opportunities? They are looking to make a profit like any other business; their stock price on Wall Street will always be among their primary concerns. By filtering their marketing message into patient groups, drug firms can reach the public in a very effective way. The problem with this that so many Americans placie their trust in the groups they believe are representing them, and have limited awareness that a group’s agendas and actions may be influenced by its ties to a pharmaceutical company.

The timing of the donations is often carefully planned by the drug companies to coincide with their marketing strategies. For example, Pfizer was a major fund provider to the Restless Leg Syndrome Foundation in 2003 and 2004. However, after the company announced plans to stop manufacturing its candidate RLS drug in July 2004, all donations to the patient group stopped abruptly.

Influence
A study undertaken by the New Scientist in 2007 to investigate the extent of influence by drug firms on patient groups attempted to find out exactly how many dollars were being used to buy marketing power. In certain cases, the donation funds were huge; the American Heart Association, for example, was found to have received more than $23 million from drug companies.

The study found that in total, seven groups received more than 20 percent of their funding from drug firms: the Depression and Bipolar Support Alliance, the Restless Leg Syndrome Foundation, Children and Adults with Attention Deficit/Hyperactivity Disorder, Child and Adolescent Bipolar Foundation, C3: Colorectal Cancer Coalition, the Narcolepsy Network and the Hypertrophic Cardiomyopathy Association.

One group that caused much ethical outrage over its relationship to pharmaceutical companies was the Depression and Bipolar Support Alliance in the UK. Allegations of disease mongering were made following the revelation that the patient group had received more than half of its funding from the industry. The group remained vague about the exact figures, but when annual reports and tax return figures were combined, the amount was found to be equal to 77 percent of its revenue.

One example of this that caused most outrage is the Society for Women’s Health Research (SWHR) and its connection with the drug firm, Wyeth. In July 2002, the National Institutes of Health (NIH) announced its abandonment of the study of the effects of Prempro, the market-leading hormone replacement therapy (HRT) drug, produced by Wyeth. The study was expected to last eight years and to produce glowing reports of HRT, but after only five years of clinical trials, the NIH announced it had secured enough evidence to deem the drug a health risk to women who use the drug over time.

The HRT drug was one of Wyeth’s most important drugs, earning them $900 million annually in sales and holding a 70 percent share of the HRT market. Following NIH’s announcement, welcomed by women’s health and consumer groups across the globe, Wyeth’s share prices dropped dramatically and affected them so much that they called in lawyers to file a class-action lawsuit against the NIH. 

Controversy
However, the controversy surrounding the drug came not because of the filed lawsuit, but because of the support for the drug from the SWHR, who condemned the NIH’s decision and distributed letters to newspapers across the country in support of Wyeth. When Washington Monthly news journalist Alicia Mundy investigated SWHR’s support of Wyeth, she found that although the company is represented on the group’s corporate advisory board, the patient group’s funding details remain obscure.

Doubt about the transparency of SWHR’s support of the drug deepened further with the knowledge that Wyeth is a corporate sponsor of the patient group’s annual fundraising ball at the Washington Ritz Carlton.

The questions that surround such partnerships center on the amount of influence gained by such funding, and whether this affects what the patient groups do. Many patient groups are charged with producing treatment information for the patients, which could obviously be influenced by which pharma company is funding them and what drug it is marketing.

However, are the drug companies really all to blame for the controversial astroturfing? Just as the funding provides the pharma firms with influence, it also brings significant benefits for the patient groups. Some groups argue that without the funding, they would be unable to operate, and with the additional funds they are able to serve more patients than if they excluded drug firms altogether.

However, many critics claim that even if the level of transparency of a patient group is extremely high, it still loses its claim to objectivity and cannot properly represent its patient group if it receives funding from a specific group, pharma or not.

If funding of patient groups by pharmaceutical companies is to continue, there should be transparency around how much is given to which groups, and patients should demand full disclosure before placing their trust in any association supposedly advocating on their behalf.