The New York Times ran an article today under the headline: Lyme disease is spreading fast. Why isn’t there a vaccine?

Most troubling to me is how the article quotes certain people in a way that totally misrepresents who they are.

Here’s a worrisome case in point:

The article states: Dr. Stanley A. Plotkin, an emeritus professor of pediatrics at the University of Pennsylvania, said that the loss of the vaccine was a “public health fiasco.” He and other researchers said that in the years since, public opposition prevented drug companies from investing in another vaccine that could fail on the market.

It is true that Plotkin is an emeritus professor. It’s also true that he has been a paid consultant to vaccine manufacturers for years. (A simple Google search turns that up.) Shouldn’t that be mentioned in the article? Doesn’t that put his comments in a different light?

Interesting to note that the “public health fiasco” link in the paragraph above goes to a pro-vaccine op-ed that Plotkin wrote for the New York Times in 2013. That article also failed to disclose that its author was a paid consultant for vaccine interests at the time of publication. Seems like a serious oversight to me.

Here’s another illustration:

The article states: Dr. Phillip J. Baker, the executive director of the American Lyme Disease Foundation, a nonprofit group run by volunteers, predicted that opposition from Lyme groups that are suspicious of the medical establishment would hinder any vaccine’s prospects.

It’s true. Baker is executive director of the American Lyme Disease Foundation. But what is that group and who does it represent?

Astroturf

The ALDF is what can be termed an “astroturf organization.” It masquerades as a grassroots group whose name offers no hint of the special interests behind it. (See: The bogus grassroots of the American Lyme Disease Foundation.)

In fact, ALDF is a front organization for the Infectious Diseases Society of America (IDSA). Virtually all of its board members and scientific advisors are members of the IDSA. Several are co-authors of the odious 2006 IDSA Lyme treatment guidelines—which the Lyme community views as being one of the major stumbling blocks for patients seeking appropriate diagnosis and treatment of Lyme disease.

Plain and simple, ALDF does not represent Lyme patients.

Our letter to HHS

In August of 2017, the Department of Health and Human Services (HHS) was poised to choose representatives of Lyme patients for its Tick-Borne Disease Working Group.

The Lyme community was deeply worried that the ALDF might be chosen to “represent” us.

At that time, LymeDisease.org sent a letter to HHS—co-signed by 48 other Lyme patient organizations—stating in part:

The undersigned advocates and representatives of the Lyme and tick-borne diseases community are advising you that the American Lyme Disease Foundation (ALDF) does not represent patients. We respectfully request that you not award that organization any of the spaces reserved for patients on the federal Tick-Borne Working Group established by the 21st Century Cures Act.

The ALDF represents the interests of researchers affiliated with the Infectious Diseases Society of America (IDSA). Yet it portrays itself to the press and others as a patient organization. 

In closing, our letter stated:

As real grassroots support groups representing real patients with Lyme disease, we want to make clear that the ALDF does not represent the interests of people with Lyme and other tick-borne diseases. We regard the ALDF’s positions and statements regarding Lyme disease as harmful to patients.

To our relief, no patient/advocate seats on the Working Group were awarded to the ALDF.

Click here to read the whole letter: ALDF letter

Clarifying where views actually come from

The issue of bringing a Lyme vaccine to market is heating up. There will likely be lots of articles airing lots of differing opinions in the coming months.

I’m not saying that reporters shouldn’t cover varying viewpoints regarding this contentious topic. But it’s essential to clarify where those viewpoints actually come from. Paid consultants to vaccine companies should be labeled as such. Organizations that don’t represent patients should not be allowed to speak for us.

The following blogs cover more aspects of the Lyme vaccine debate:

Why we care so strongly about a potential Lyme vaccine

“Powerful” patients axed Lyme vaccine? Baloney!

Lyme vaccine failed because safety was ignored

Important background on Lyme vaccine controversy

TOUCHED BY LYME is written by Dorothy Kupcha Leland, LymeDisease.org’s Vice-president and Director of Communications. She is co-author of When Your Child Has Lyme Disease: A Parent’s Survival Guide. Contact her at dleland@lymedisease.org .