Tag Archives: lyme research

lobbying for lyme_sara tyghter_eric hargan

Lobbying for Lyme Disease on Capitol Hill

Learning first-hand the power of coming together to get things done, as Lyme patients and advocates joined together in Washington, D.C. to lobby for Lyme disease research and awareness

 

by Sara Tyghter, Director of Education and Outreach, GLA (pictured with HHS Deputy Secretary Eric Hargan)

As I traveled to the Center for Lyme Action’s (CLA) first Washington, D.C. “Fly In” last month, I wasn’t sure what to expect. I knew CLA, a new advocacy group focused on lobbying at the federal level, had organized a two-day program (Feb. 11-12) and that Lyme advocates would be converging on the nation’s capital to make their voices heard. But I had never done any lobbying before.

Any feelings of apprehension quickly disappeared as I joined with 60 advocates from across the country who were in D.C. to tell their Congressional representatives why federal funding to grow Lyme and other tick-borne disease programs is urgently needed. More specifically, we wanted to ensure that they maintain their strong commitment to the Kay Hagan Tick Act. Signed into law in December 2019, the Tick Act represents critical federal support for researchers as well as millions of people suffering from Lyme disease; it still requires funding ($150 million over five years) and there is no guarantee these monies will be appropriated.

lobbying for lyme
Team GLA, L-R: Ambassadors Mark Liberto, Breanna Liberto, Jen Kenley, Melinda Sander, GLA Director of Education and Outreach Sara Tyghter, and GLA Peer Mentor Kiki Penn

It was rewarding meeting with those representing other Lyme organizations, or who were there on their own because they are passionately committed to ensuring Lyme disease research receives the attention it deserves. I was delighted to finally meet with six Global Lyme Alliance volunteers who are committed to raising Lyme disease awareness in their communities; these were GLA Education Ambassadors Mark Liberto and his wife, BreAnna (Pennsylvania), Jen Kenley and her mom Wendy Crane (Tennessee), Melinda Sander (Missouri), and Peer to Peer Mentor Kiki Penn (Florida). In addition, GLA supporters Alex and Lynda Moresco (Illinois) were also there to lobby their local officials.

Rep. Vicky Hartzler's (R-MO) Senior Legislative Asst Bryan McVae, GLA volunteer Alex Moresco, GLA Ambassador Melinda Sander
Rep. Vicky Hartzler’s (R-MO) Senior Legislative Asst Bryan McVae, GLA volunteer Alex Moresco, GLA Ambassador Melinda Sander

After arriving, we all went to the Capitol for training and later to attend an awards dinner honoring Sen. Susan Collins (R-ME) and others who have sponsored and supported legislation for Lyme disease. Others receiving awards were Senator Tina Smith (D-Minnesota), Congressman Chris Smith (R-New Jersey) and Congresswoman Anna Eshoo (D-California).

Sen. Marsha Blackburn (R-TN) with GLA Ambassador Jen Kenley (
Sen. Marsha Blackburn (R-TN) with GLA Ambassador Jen Kenley

The second day was devoted to meeting Senators and Congressional representatives, though most of us met with their staff members. CLA had supplied us with talking points and information packets for distribution. We went to meetings in various Senate office buildings and the Capitol wearing distinctive bright green neck scarfs we all had been given. (I learned that such colored identifiers are being used these days by grassroots lobbying efforts). After two days I looked at my Fitbit and saw I’d walked eight miles.

Sen. Roy Blunt (R-MO) with GLA Ambassador Melinda Sander
Sen. Roy Blunt (R-MO) with GLA Ambassador Melinda Sander

I along with another advocate from Connecticut met with three state offices representing our state of Connecticut—the legislative correspondent for Sen. Christopher Murphy, and legislative assistants for Sen. Richard Blumenthal  and Congressman Jim Himes. At all of our meetings I was impressed by the level of knowledge regarding risks associated with contracting Lyme disease as well as the long-term complications that people living with the illness may experience. The representatives were empathetic and truly wanted to understand the overall impact of the disease on patients and their families—not just in terms of physical health, but finances and emotions as well. I walked away from each meeting feeling confident that our lobbying efforts were well received. Our meetings were truly rewarding because every office representative we met with possessed a long-standing commitment to the Lyme community, and knew the importance of allocating the funds to support the Kay Hagan Tick Act and other Lyme-related projects.

After my two days there, I felt energized and more determined than ever to spread the message that federal funds for Lyme and other tick-borne diseases must be fully committed if we are to protect the long-term health of an increasingly vulnerable segment of Americans. It was truly a worthwhile endeavor and I’m proud to have been a part of this effort. As Senator Collins said, “we must knockout these devastating diseases.” Lobbying was new to me, but I am ready to continue the fight!


Additional Resources:
– Join Team GLA as a Lyme Education Ambassador
– GLA Education Tools & Resources
– GLA Patient Support Services

lyme education

Lyme Education: LDA/Columbia Annual Scientific Conference

Lyme & Other Tick-Borne Diseases: 20th Annual Scientific Update for Clinicians & Researchers

Organized by LDA and Columbia University

Dates: September 21 & 22, 2019

Location: Hilton Penn’s Landing in Philadelphia, PA.

This conference is designed for medical & health professionals & researchers, but it is also open for registration to the general public.

Featured speakers are clinicians and researchers from across the US and other countries. Click here for more information and to register.

maybe its lyme_gla

How the New “Maybe It’s Lyme” Article Hurts Lyme Patients

Is this becoming a trend? Another opinion piece on Lyme disease that dismisses post-treatment and chronic Lyme disease. The author calls these debilitating stages of Lyme an “identity” for people rather than an illness. And ridicules patients for finding solace online, in a community of people who are suffering from the same illness. Can you imagine someone writing an article that dismisses patients with late-stage Alzheimer’s, another illness that relies on a combination of clinical diagnosis and laboratory tests?

The story, “Maybe It’s Lyme. What happens when illness becomes an identity?,” by Molly Fischer feigns to take a fact-based approach. Yet when she cites Global Lyme Alliance (GLA), not once is there a direct quote, but rather second hand accounts from fundraising events. In one sentence the author states, ““chronic Lyme,” which can encompass a vast range of symptoms and need not be linked to any tick bite — has grown into a phenomenon often untethered from scientific method or peer review.” Yet if she had referenced the multitude of peer-reviewed studies on the GLA site or performed even a modest Google search for “Lyme disease research”, she would have found the science she quickly dismissed as lacking.

Does more research need to be done to better understand the persistent and chronic form of the disease? Absolutely! If she had called to speak with one of our two in-house Ph.D.s they could have had an in-depth conversation about tick-borne disease research, from basic science, understanding the persistent form of the bacteria, to treatment options. But that didn’t happen. Unfortunately, articles like this,  that dismiss and mock Lyme patients, hinder that progress because it influences the community that more research is not needed. Articles like this delay progress and ultimately hurts patients.

There is one item in the article we can agree with. Yes, there are some Lyme physicians who treat without science, studies, or clinical trials to support their protocols. Some are more genuine than others. But as in the early days of HIV, before protocols were developed, many doctors were forced to try various treatment options, looking for the right combination that would alleviate pain and suffering. And yes, patients desperate to feel better subscribe to these treatments. But what else would you suggest they do? There is no standard of care for anything beyond acute Lyme disease. And even that doesn’t work for everyone, with 10-20% continuing to suffer symptoms.

What does the author prescribe for the two million patients that will suffer from post-treatment Lyme disease by 2020? And the untold number of patients who did not have the “fortune” to be diagnosed and treated early in the disease, that while the bacteria had time to move to the patients’ heart and other organs, the illness got worse and worse, and then harder to eradicate.

The bottom line? We must work together to help patients, not tear them down.


GLA invites anyone needing facts about Lyme disease to reach out to us.

What We’re Thankful For–Thanksgiving 2016

As we approach Thanksgiving, many of us pause to reflect on why we are thankful.

 

Without a doubt, the challenges with Lyme remain—better diagnostics and improved treatments are still sorely needed.  But there are some things we and others in the Lyme community can be grateful for this year:

More Celebrities Speak Out

Supermodel Bella Hadid and President-elect Trump’s former wife, actress Marla Maples, were honored by GLA in 2016. They joined a growing list of celebrities who are turning the spotlight on Lyme disease, including singer Avril Lavigne; TV personality Yolanda Hadid; basketball superstar Elena Delle Donne; TV producer and author Ally Hilfiger; Daryl Hall; Marisol Thomas, wife of Matchbox Twenty frontman Rob Thomas, among others.

New State Laws Help Lyme Sufferers

Maryland’s first ever Lyme disease law requires healthcare providers and medical laboratories that draw blood for a Lyme test to give patients a written statement explaining the potential for inaccurate test results. In Massachusetts, health insurers must now cover long-term Lyme antibiotic treatment prescribed by a licensed physician.

Increased Research Interest

GLA received a record number of 31 grant requests for 2016-2017 research funding, an 80 percent increase over the previous year. This year’s applications are from researchers at top-tier universities in the United States, Australia, France, Switzerland and the United Kingdom. While their areas of research are diverse, it’s clear that the tick-borne disease community is zeroing in on unraveling the complexity of Lyme disease.

IDSA Guidelines Removed from Federal Database

Outdated Infectious Diseases of America (IDSA) guidelines were removed early this year from the National Guidelines Clearinghouse (NGC), a federal database used as a reference for physicians and healthcare practitioners in treating Lyme patients. The guidelines, currently undergoing revision, have for years restricted antibiotic treatment of Lyme patients to between two and four weeks. At present, only the guidelines from the International Lyme and Associated Diseases Society (ILADS) are on the NGC.

Increased Media Coverage of Lyme

FOX5 News aired two specials watched by tens of thousands called “Lyme & Reason: The Cause and Consequence of Lyme Disease” and “Lyme & Reason 2:0: Lyme Disease & The Voices of Change.” In addition, Lyme disease stories aired on WNET/MetroFocus, WBUR/PBS, CBS and local outlets as well as in national publications such as Huffington Post, Science, Town & Country, and others.

Most of All

… we are grateful for the unwavering support of Global Lyme Alliance’s volunteers, donors, and friends. Please help us accelerate progress in the fight against Lyme and join us in our Quest for the Test, GLA’s global effort to raise funds for a critically needed Lyme diagnostic test.

Wishing you and your loved ones a Happy Thanksgiving.

image_donate-now_final