The first time I learned how bad the Lyme situation is in Massachusetts was when I met a retired teacher named Mary. After years of misdiagnosis, and fighting for and being denied care, Mary died from Lyme disease.
Later, Trisha McCleary, Co-Founder of Sturbridge Lyme Awareness of Massachusetts (S.L.A.M) spoke at a conference I attended. Trish’s personal Lyme experience was one of the worst I’d ever heard. Brian, her husband and S.L.A.M. Co-Founder, literally carried her into and out of hospitals, as numerous doctors sent them home, unable to understand her left-sided facial droop, inability to speak and other classic Lyme symptoms. Lack of insurance coverage meant she had to stop treatment, only to have symptoms return.
Trish joined forces with Newton native Michelle Treseler, to found the Massachusetts Lyme Coalition. Michelle experienced full-blown Lyme in the midst of doing her Fulbright research on chronic disease prevention. She spent the next three years mostly bedridden, while experiencing unremitting fever, heart palpitations, peripheral neuropathy and muscle tremors. Going through her own insurance hurdles convinced her to fight on behalf of those who were too sick to fight for themselves.
Here’s how Trish and Michelle catalyzed the entire Massachusetts Lyme community and legislature to pass a law that requires insurance companies to pay for long-term antibiotic therapy for Lyme disease, and cover experimental drug therapy, as long as the drug is approved by the FDA and indicated for off-label use with Lyme.
Lyme Nation: What is happening in Massachusetts with regard to Lyme?
Michelle Treseler: Massachusetts is second in the nation for confirmed cases of Lyme disease. The Centers for Disease Control estimates well over 300,000 cases annually across the United States and, due to the CDC-acknowledged underreporting of Lyme disease by as much as a factor of ten, there may be over 50,000 people infected each year in Massachusetts.
Trisha McCleary: The massive numbers of people in Massachusetts now affected by Lyme cannot be denied. Legislators and their families are among those affected/infected and together our voices prevailed to allow affordable access to treatment. In Massachusetts legislators have indeed taken a stand to serve as a voice for the people, in the midst of a “crisis”.
Michelle Treseler: Due to the passage of our bill, Massachusetts is now, (amongst a small groups of states), leading the nation in legislation that protects people who are affected by Lyme disease. We have made health insurers accountable for holding up their end of the bargain with consumers who pay to insure their health.
LN: Prior to the legislation that you recently got passed, what was the situation with insurance coverage for Lyme in MA?
Michelle: The situation in Massachusetts was heart wrenching; the gaping holes in insurance coverage were placing people’s lives on the line. Some families who had multiple people affected by Lyme disease were forced to choose which kid received their medication that month because they couldn’t afford to treat both kids at once. Other individuals and families were facing foreclosure, some even losing their homes as people were too ill to work and couldn’t afford their physician-prescribed treatment. Some small business owners had to close their businesses, as they were too sick to oversee their livelihood. For all these sick people, health insurers were basically saying, “Sorry – we’re not listening to you or your doctor. We’ve decided that 28 days of medication should cure you.” At best, the situation was painfully grim and quite bleak. People were suffering and some were dying.
LN: How did you get the legislation passed?
Trisha: Years of raising awareness and educating legislators played a role and having both House, (Representative David Linsky), and Senate sponsors, (Senator Anne Gobi), of identical bills seemed to make a difference this time around. Approximately 70% of the Massachusetts legislature signed on to co-sponsor the bill, at our request and the request of their constituents, and they stuck by us throughout the process. We (the MA Lyme Coalition) kept direct contact with legislators to keep them informed of the bills progress/changes along the way.
Michelle: The bill passed because of the efforts of thousands of Massachusetts residents speaking as one unified, collective voice.
We were on-call all day, almost every day, to proactively guide the bill through the legislative process and to respond to any exterior or interior threats to the effort, such as the need to keep as cohesive a community as possible or the ability to maintain legislative alliances despite powerful insurance lobbyists.
We spearheaded a multi-faceted effort, using direct outreach to engage with people affected by Lyme disease (including support group leaders). We increased awareness in the legislature through many face-to-face meetings with our senators and representatives. We engaged the media by writing numerous editorials, giving interviews and sending press releases throughout the process to many newspapers throughout the state. We used technology to our benefit by engaging thousands of people on a weekly basis through Facebook alone, and leading Twitter and e-mail campaigns which encouraged grassroots outreach to the state house. Our social media strategies for engaging and informing the Lyme community proved critical in our ability to quickly mobilize the community to take immediate action (e.g., send e-mails, make phone calls, etc.)
One of our Twitter and Facebook campaigns—the “Massachusetts Faces of Lyme” was an unexpectedly key component of the campaign to win the hearts and minds of our legislators. We started this campaign, which was based in part on a participatory photography strategy of citizens communicating concerns to policy makers, so legislators could see their constituents who would be directly affected by passage of the Lyme legislation. We found it essential to appeal to our common, shared humanity. Many legislators engaged with us on Twitter and also reached out to us via phone and e-mail to say it made a significant impact on their own unwavering decision to support the bill, and on their colleagues’ decisions to stand by us as well. As many people were too ill to meet with their legislators in person, this participatory tool was incredibly useful.
Twitter and Facebook provided a platform for us to connect citizens’ faces and their Lyme battle with their specific legislators. We’d also tweet or post educational information, such as how many people in a legislator’s district, county or town were reported as diagnosed with Lyme disease, along with their constituents’ faces who would be directly impacted by passage of the bill.
LN: How long did you work on it?
Trisha: My husband and I founded S.L.A.M. in 2009, to provide support and resources for Lyme patients, and raise awareness overall. S.L.A.M.’s mission also includes working as legislative advocates to provide patients access to affordable care. In terms of the insurance bill, I personally worked on it about 5 years; first being part of writing a law which established the Massachusetts Lyme Commission, then serving as a governor appointed member of the commission. Two years ago, Michelle and I co-founded the Massachusetts Lyme Coalition. Our mission was to get this law passed and to ensure the Lyme community had a voice every step of the way.
Michelle: Over the past 4 years, I poured my heart and soul into legislative advocacy, educating, increasing awareness, and working together with the community to address access to physician-prescribed treatment.
First, I re-wrote the bill – this was a crucial step as the prior proposed legislation that had been repeatedly been put forth, in one way or another, over the past decade contained “fatal flaws.” Components of this earlier proposed bill, if it had passed, would have harmed more than it helped people with Lyme disease; it would have restricted access to care and made it more difficult for people to access their medications. Given my health policy and health promotion background, I was able to spot the problems and I consulted with two former Assistant District Attorneys to make sure the new bill was as succinct and legally sound as possible.
Second, I wrote a one-page legislative brief for all the legislators, their staff and other government officials. The brief explained the problem the bill would solve (i.e., Massachusetts residents being denied insurance coverage for Lyme disease treatment), how many Massachusetts residents were affected, the minimal cost of this legislation, and how the legislature could reduce suffering and increase productivity through this legislation: a win-win for Massachusetts.
Third, I co-authored a report to the Massachusetts Center for Health and Information Analysis, a government agency charged with analysis of legislative efforts and their resulting costs, explaining why the proposed legislation would result in little to no cost to the Massachusetts economy. This was a huge hurdle to overcome as the ultimately favorable CHIA report would become a rallying cry for legislative support, as the Center for Health and Insurance Analysis Report found that if the bill was passed, it would result in little to no impact on insurance premiums for policy holders.
LN: I was personally inspired by the video of your skillful and powerful testimony in front of the Massachusetts Legislature. What other strategies did you use to get the bill passed?
Trisha: We educated legislators and made them aware of constituents suffering with Lyme, keeping the pressure on them to assure them that we would NOT go away. Maintaining contact with the entire MA legislature to keep them informed on the bill’s progress was key, as was asking the MA Lyme community to make phone calls, write letters and testify at hearings. Keeping the Lyme community engaged and part of the process was essential.
Michelle: Here are a few ideas for others trying to create a strong foundation for constructive change and replicate our model:
- Identify the problem(s) and the policy issue(s): e.g., citizens unable to access doctor-prescribed medication for Lyme disease due to insurance denial of coverage
- Listen to, involve and work with the community to define your goal: e.g., insurance coverage of doctor-prescribed medication to treat Lyme disease
- Assess what has been done so far. Has it worked? Why or why not? In our instance, the bill had been proposed for over a decade without getting passed. Why? A good place to start is to look at the opposition within and outside of the community. Are “champions” of the bill actually trying to get it passed or not? Who might not want it to pass?
- Carefully evaluate what has been done so far. A good place to start is: Do you have a legally sound, effective bill? If not, is there another state that has passed a similar bill? For information on the Massachusetts law, see An Act Relative to Long Term Antibiotic Therapy For The Treatment of Lyme Disease
- Assess community readiness: do you have a community that is ready to actively engage in working towards this goal? If the answer to is no, then would other strategies help prepare the community, e.g., increasing education and furthering awareness? If yes, then continue
- Identify key stakeholders – both allies and opponents internally (in the community) and externally (outside the community, e.g., legislators, insurance lobbyists, etc.)
- Identify other resources: (e.g., finances) Trish and I used our own money for pamphlets, wristbands, etc.
- Build support amongst key stakeholders and allies
- Establish credibility as advocates/organization: MA Lyme Coalition was upfront and we shared our own background and our journey with the community from the beginning
- Build trust through transparency
- Co-create, develop and implement plans of action
- Engage and empower the community to take action. Suggestion: When working with a community that has chronic illness challenges, make it as easy as possible to take action. We provided sample e-mails, and phone call scripts that could be used. We came up with the Twitter campaign “Faces of Lyme” so citizens who did not feel well enough to meet their legislators in person could still have their voice heard and their face seen
- Educate and increase awareness amongst legislators
- Identify key principles for your organization, such as: open communication, courage, compassion, transparency, trust, and hope. This will help serve as crucial guideposts when encountering challenges
- Channels of communication: communicate directly with the community (don’t just use e-mail listservs that haven’t been created by you)
- Create and distribute key messages that can be easily used by your community
- Discern when dialogue, negotiation, or public pressure is the best tool.
LN: What do you think most made you able to be successful?
Trisha: A few things:
- Ensuring the beautiful Massachusetts Lyme community was part of the process every step of the way, by engaging legislators and asking for their support
- Staying focused through ups and downs during the process and knowing we were doing this for all of the right reasons
- Social media and networking allowed MA Lyme Coalition to reach thousands with every post, tweet etc., yielding strong community response at critical times.
Michelle: Trish and I are a good team. We gave each other many gentle reminders to stay in the light, with our words and actions, despite the many challenging discoveries along the way of people masquerading as allies, or when we’d encounter unanticipated roadblocks. Also, all the steps mentioned in my previous answer are helpful in creating a strong foundation for a participatory-based approach to constructive policy change.
There is a book that I would often reference when I felt any semblance of despair, entitled “The Impossible Will Take a Little While.” The collection of essays from inspirational leaders and activists gave me renewed hope, faith, patience and resolve. I tried as best I could to navigate the political terrain with some grace. The way I chose to do it is through a mnemonic device that came to me while I was working on the legislation one day. GRACE: GRatitude. Acceptance. Clarity. Equanimity. I would find something to be grateful for each day. I’d accept where we were in the process while striving to maintain clarity, and sustain equanimity.
LN: What challenges did you face in getting it passed?
Trisha: There were a number of obstacles:
- Insurance company lobbyists who didn’t want this bill passed fought hard to stop us
- Governor Baker twice put up significant obstacles – first, amending the bill with harmful language and second, vetoing the bill
- Some people claiming to be advocates actually worked against our bill
- As Co-founders of MA Lyme Coalition, we are also Chronic Lyme Disease survivors and managing our own health through the stress and long hours was a challenge.
Michelle: The cards were stacked against us. We were up against not only the powerful insurance industry and the Governor of Massachusetts, but also the Infectious Diseases Society of America, and the main news outlet, the Boston Globe. It was a David vs. Goliath battle. For instance, the Boston Globe wrote an editorial, “Lyme Bill a Prescription for Trouble.” I wrote this rebuttal, “An Open Letter to the Boston Globe.”
Regarding our own health, we would laughingly refer to ourselves as “the walking wounded.” Trish and I would remind each other to prioritize our health and encourage each other to take a break and recharge when necessary. To be completely honest, my health suffered as a result of my laser-focus on the legislation. I tried to lead a more balanced life and not forget to take medications or stay up until 2 am writing e-mails, but there were times when I definitely had a one-track legislative mind, and my body would suffer as a result. Also, there is a lot of negativity in the political arena, so I’d have to regroup and find a way to balance which was often practicing more Qigong, restorative yoga, or simple enjoyment of anything unrelated to Lyme disease. It was a learning experience.
LN: When did you find out the bill had passed, and how did it feel?
Michelle: On the last day of the formal legislative session and with just a few minutes to go before midnight (and frankly, the end of the bill if it was not passed), I was watching the legislative session on my computer, tweeting and texting to legislators as a last ditch effort. When I heard the Lyme bill introduced on the floor at the State House, my eyes were fixed on the computer and when it passed a few moments later – I was just so relieved that it had passed, and that everyone’s hard work had achieved “the impossible” with only 2 minutes to spare! I expected to feel elated, and yet in 10 minutes I cycled through feeling shock, relief, sadness, and then a deep sense of calm. Shock that it passed with just 2 minutes left, relief that it had passed and will help thousands, sadness for those it won’t help, and then calm as I knew I had done all that I could.
LN: How will this legislation change things for Lyme patients in Massachusetts?
Trisha: For many it will allow affordable access to physician prescribed treatment and we are hopeful more physicians will choose to specialize in tick-borne diseases. Sadly our bill does not cover those on MassHealth but we remain hopeful everyone will be covered in the future when insurance companies realize the sky did not fall by passage of this law.
LN: Do you feel it is an important precedent?
Trisha: This law puts the care of patients into the hands of a licensed physician, not insurance companies. It provides a long overdue and necessary option for Lyme patients and is an important “next step” to address the Lyme epidemic.
LN: What kinds of changes would you like to see happen with regard to the way our society responds to Lyme?
Trisha: I would like to see more physician education in every hospital teaching the current ILADS treatment guidelines, and physicians taking a stand against outdated teachings and testing. I believe with education comes understanding, compassion and clarity of the critical situation we face with tick borne illnesses. Improved funding of research for better testing of tick-borne disease is essential and must be supported on a federal level.
Michelle: I would like to see more compassion for anyone with any invisible illness. I’d like LLMD physicians to be allowed to practice medicine without censure or threat to their license. I’d like for greater awareness and understanding of what life is like for people living with Lyme disease which may lead to increased social support and further advocacy efforts.
Ultimately, I would like to change the way we look at and even define the scope of health and well-being. There are many determinants or components of health: these include not just behavioral and biological, (which are what we tend to focus on), but also social, political, economic, environmental and, for some, spiritual components as well. If we as a society are able to accept this more comprehensive view of health and well-being, we will be better positioned to address our health inequities and inequalities.
LN: What do you think it will take for that to happen?
Michelle: Action. Martin Luther King, Jr. said, “Human progress never rolls in on wheels of inevitability; it comes through the tireless efforts of men willing to work to be co-workers with God, and without this hard work, time itself becomes an ally of the forces of social stagnation. We must use time creatively, in the knowledge that the time is always ripe to do right.”
Besides increasing awareness and furthering education, I think it will take people stepping forward and contributing their expertise to turn the tide with Lyme disease. There are many determinants of health so people can work on social, economic, or environmental determinants of health, and the more obvious – biological and behavioral – to either directly or indirectly prevent or help mitigate the impact of Lyme disease on individuals and our society.
LN: Do you have any upcoming initiatives you’d like to share?
Michelle: One of the gifts of Lyme disease is remembering that we are all interconnected. In my own healing journey, I have been fascinated by the various determinants of health and the “root cause” of illness. As a result, I am now interested in spiritual ecology, given the pressing need for the restoration of harmony, mutuality and reciprocity between people and the earth. We face enormous challenges as a human species, and I believe we must work with each other and with the earth to protect our future.
Finally, I’d like to say to the Massachusetts Lyme community, “Together, we made a difference!” I have a deep sense of gratitude to the Lyme community, the Massachusetts legislators, family and friends – thank you for trusting us, for believing in us and for working with us. No matter what your challenge, no matter what you face – there is always hope. Through my Qigong practice, I learned a word in Chinese, “Haola” which roughly translates to “all is well and getting better.” May all be well and get better: Haola!
For more information, S.L.A.M., can be reached by email at S.L.A.M@msn.com, and or via their Facebook page. The MA Lyme Coalition’s email is LymeCoalition@gmail.com, or follow them on Facebook and Twitter.
At a time when so many in the Lyme community are calling for change, Lyme Nation believes it is important to learn from people who have actually created it. Thank you, Trisha and Michelle – for your work on behalf of Lyme patients – and for your generosity in taking the time to share your advocacy methods.
Tags: Boston Globe, community building, GRACE, Haola, House Bill 4491, IDSA, ILADS, Lyme advocacy, Lyme disease, Massachusetts Lyme Coaltion, Michelle Treseler, policy change, S.L.A.M., spiritual ecology, Trisha McCleary