I have been reading a lot of Lyme community web traffic regarding the Federal bill S. 1503. This bill provides for enhanced Federal efforts concerning prevention, education, treatment and research activities related to Lyme disease and other tickborne illnesses.

This legislation also includes the establishment of a Tick-Borne Diseases Advisory Committee.  I suggest that if you have not read the bill please do so.

I want to share with you my opinion on Federal bill S. 1503.  My opinion is based upon prior work on federal legislation.  My opinion is also founded in my experience working with marginalized groups who are trying to gain access to resources, become partners in policy decisions that affect their lives, and be recognized as essential and valuable participants in the process of nation building.

Our Lyme community represents different social, economic and cultural circumstances. However, as a group we have been denied access to healthcare and treatment options for 40 years.  As a group, we have been denied adequate health insurance coverage for a complex and lingering disease.  In addition, most of us have experienced being bullied, dismissed and having our symptoms trivialized by health practitioners.

These situations have been created by 40 years of institutionalized practices and biases.  These institutions represent federal agencies, state and local government, medical and scientific organizations and major departments in our nations’ universities.  Forty years of institutionalized bias has seeped deep into our culture.  Therefore, in addition to physical debilitation, many of us have lost the emotional support of our friends and our families who were led to believe that we did not have a real or significant illness.

We have been called loonies, dangerous, invalid stakeholders and hopeless.  Many, many thousands of us have been financially ruined in addition to suffering devastating health consequences from Lyme disease and TBDs.  In essence and in fact, the Lyme community is a marginalized group.  

Furthermore, we are among the few marginalized groups that is made up of individuals who, prior to contracting Lyme and TBDs, were not particularly marginalized.  In fact, prior to being transformed into ‘hopeless loonies’ many of us met the marks of success that that define our society.

With this history and the challenges facing our community, I understand very well why there are concerns about Federal bill S. 1503.  I will attempt to address these concerns in my review of the bill.

Before looking at concerns regarding Lyme community representation, let’s get a sense of the bill’s voting privileges.   According to the bill, the Secretary of Health and Human Services will appoint a minimum of 12 voting members.  Of which two – at minimum – are patient representatives, another two – at minimum – are our Lyme advocates from organizations.  No federal agency has voting privileges; they are ex officio members.

The bill does not name who will represent the Lyme community.  Therefore, it will be up to the Lyme community to nominate who can be our best patient representatives and who can be our best Lyme Advocacy organization representatives.  We will then have to ensure that the Secretary understands the importance of our choosing our own nominees for appointment to the Committee.

Secondly, the bill does not stipulate that a patient with chronic Lyme or TBDs should be a voting member. The bill simply provides for two Lyme patients – at minimum – to be voting members.   Again, it will be up to the Lyme community to ensure that patients who have chronic Lyme or who really understand chronic Lyme will represent those of us who have chronic Lyme.

At this point, we have just covered four of the 12 minimum votes.

Regarding healthcare providers, there are minimum of two representatives or votes.  Of these two, at least one is to have “relevant experience” treating acute and chronic Lyme disease and other tick-borne diseases.  As a community, we need to define what is meant by relevant and provide suggested nominees.

We are now down to six remaining votes. Of the six remaining votes, there are a minimum of two representing state and local health departments and national organizations that treat Lyme and TBDs.  ILADS would meet this criteria. We could ask this group to be expanded in numbers and votes to include two or more ILADS representatives.  In addition, it will be important to identify persons from state and local institutions who are at the minimum, open-minded, when it comes to chronic Lyme and co-infections.

The last four members – at minimum – are to represent the scientific community and its wide range of viewpoints regarding Lyme disease and TBD.  Fortunately, of the disciplines identified, our community has ready allies in microbiology and veterinary medicine. Epidemiology, public health, entomology and pest management are other disciplines we may need to vet for bias.

As noted, the bill makes provisions for a minimum of 12 voting members. However, it may be that there are more than 12 voting members appointed.  In that case, we must ensure that the balance of the final chosen members show adequate representation of our community. For example, should there be 18 members appointed, we darn well better do everything we can to ensure that nine of them are recognize chronic Lyme and TBDs. Again, please note that all the voting members are appointed by the Secretary of Health and Human Services and none of the voting members represent the federal government. Again, the shaping of the appointment process is critical to our quality representation.

Apart from Committee representation, there are other opportunities this legislation can provide.  Like all legislation, S.1503 creates a sanctioned arena to negotiate and focus political will.  This means, there will be formal Committee meetings where notes are taken and decisions are made.   However, we will have to create opportunity around the formal meetings wherein our community can influence the outcomes of the formal Committee meetings. This is the politicking that focuses political will and it will have to be an essential aspect of our approach to shaping the outcomes of the Committee agreements.

Let us also consider how the establishment of S.1503 will support efforts for Lyme TBD legislation at the state level. The establishment of Lyme TBD federal legislation will provide a legal precedent for Lyme advocates to enact legislation at the state level.  It is always easier to generate new legislation if there is precedent. This is true at both the state and the national level.  Legal precedent is like a building block for future legislative efforts.

Additionally, our Committee representatives can cite state legislation as precedent to inform and move our federal commitments.  This is an opportunity for state and federal synergy.  For example, we could require that all federal guidance for Lyme and TBD tests be partnered with accuracy statements, such as Virginia bill that reveals the inaccuracy of standard Lyme tests.  We could require complementary federal legislation such as the Rhode Island health insurance coverage for chronic Lyme and TBDs on the rationale that insurance compliance must match changes in diagnoses and treatment options.

I understand there is also concern regarding the basic language of S.1503.  In all honesty, I think the language is sufficient.  It is not the best language, but it is sufficient for our purposes today.  And, do not forget, this bill is a building block for future legislative efforts. From my experience of working with federal agencies I know that even with the best language, legislation can lie empty of political will and be unenforced.

Don’t we all know exactly what this means?  For example, despite clear statutes regarding conflict of interest and preferential treatment there is a lack of political will to separate the CDC from the IDSA Lyme guidelines.

However, once we are formally represented as Committee voting members, our representatives will have the opportunity to dialogue directly with the Secretary and build working relationships with a number of actors.  It should also be noted, that person’s/ representatives sitting on federal Committees tend to have some clout and gain easier access to key decision-makers.  Therefore, federal Committee representation will help level the playing field and help us build political alliances in the Senate and Congress and other Federal agencies.

I do have a concern or two.  One concern is that the timeframes and deadlines detailed in this legislation could be used as a delaying tactic. By this I mean, the CDC could delay the removal of the IDSA Lyme guidelines until the Committee takes a decision. However, we can take action outside of the Committee to ensure this does not happen. 

I have a second concern related to how we will function as a community with regards to this federal Committee opportunity.  For example, there is so much necessary work to be done, how will our priorities be represented by our appointed members?

How we communicate our views to the appointed members?  We have many excellent websites that serve the wider community and there is a lot of communication among us. However, I think there may well be need for somepredictable, transparent, accountable and structured communication and decision-making processes where we can vote on items of key concern as they relate to Tick-Borne Diseases Advisory Committee and other important initiatives that affect us all.  Furthermore, our appointed representatives need to be accountable to us.   As such, we need mechanisms for this accountability.

In addition, I believe it is important that we diversify and increase our leadership.  For example, we are already a large community and it is growing every day.  Even though we may all struggle with Lyme/TBDs we represent different stages of life and different situations.  For example, my concerns as a middle-aged woman living with Lyme are quite different than that of a young woman living with Lyme who is trying to conceive a healthy child.  Those of us who have been able to stay employed have different priorities than those who are struggling to stay housed and fed.

I bring this up now because even though this Committee is science/medicine focused, our Committee representatives will have the opportunity to open dialogue with important decision-makers on a number of nonmedical nonscientific priorities for the Lyme community.  These will be opportunities to engage a more diversified Lyme leadership. Therefore, I believe it would be very helpful if we consider how we might organize our leadership base so that it is ready to engage with other decision-makers, represent other priorities and show the patient diversity of the Lyme epidemic.

In closing, let me say that I believe this law represents an acknowledgment by our federal government that Lyme and tickborne diseases are a national issue and that TBD patients and chronic Lyme patients are part of the solution.   I believe this federal legislation starts to move us as a group from the sidelines of marginalization and into the roles of national decision-makers.

We are the Lyme epidemic, we have a lot to say and we have a role to play.

Jenna Luché-Thayer’s expertise includes government transparency and accountability and the integration of marginalized groups across all sectors, including health. Luché-Thayer is informed by three decades of professional policy and grassroots experience in 40 countries.