Are you curious what the likelihood is that you may acquire a disease? Could there be a way to halt it?
If already diagnosed, have you thought about what the best course of action may be for your body, based on your genetic makeup?
Sharon Terry, CEO of Genetic Alliance (GA), offered an inside look at its mission, what individuals can learn from GA’s tools, and advice for those living with any illness.
In short, Genetic Alliance has got your back. Its influence and impact span the nation and the globe. While Genetic Alliance prioritizes you as an individual, as well as the communities we reside in, it has steadfastly worked in the legislative branch to ensure you are not discriminated against based on your genetic makeup.
GA is a 501(c) (3) non-profit organization which “engages individuals, families and communities to transform health. This requires that we, as an organization, understand what it means to transform systems, dissolve boundaries, create and sustain open space, and promote the process of openness.”*
Sharon Terry took over as CEO in 2002 as a result of genomic medicine that impacted her family in 1994. At that time, her two children (now 34 and 32) “were diagnosed with a genetic disease after a diagnostic odyssey of a couple years.” As she began to research and take action into finding out more about their diseases, “other families came to [her] and said ‘can you do it for our disease too?’”
Once at GA, Terry focused on expanding the database to all diseases. GA’s portal is informative and easy to use with a database pertinent to everyone: Disease InfoSearch.
Genomic medicine is an area that many may not be knowledgeable about but could hold the golden key to our health. No matter the disease – the outcome, the successes, the struggles can feel like a complex web of unknowns and confusion. It is time to put the spotlight on the source – our genes.
What is genomic medicine? Terry shared an easy-to-understand example, taking migraine as the condition.
“You can have two friends with migraine and one will say ‘this drug works perfectly’ or ‘this behavior works perfectly’ [and] for each other that’s not true. There are a lot of reasons for that.”
“One reason is genetics,” she said. “Our background genetics make an enormous amount of difference in how we respond to therapies.”
This leads to the importance of ‘stratification’ in health, i.e. the arranging and classifying of individuals and diseases into different groups.
For example, once we understand our background genes and the drugs that lessen its symptoms or alternatively exacerbate them, we can pool individuals providing the best suited drugs for them, lifestyle adjustments, and more. This is without question a large and tedious task.
She said that while “the drug companies are trying to do that a little bit” their models are more focused on “blockbuster models. [This] means they put out one arthritis drug, one migraine drug, one ‘name it’ drug and hope everybody will benefit from it. And we know now that is not true; we’ve always known it.”
Can you relate to that? The migraine acute and preventive medications that work for many are positive, yet many others are still searching for the ‘right solutions for them’ after years of failed treatment outcomes.
Terry provided the following conditions that would fall into genomic medicine that one may be diagnosed with. “Everything from the rare diseases, which you absolutely need to know the genetic mutation” of to “the more common, complex conditions like arthritis, all of the cancers, and skin conditions like psoriasis and eczema.”
Genomic medicine is important because it can lead to understanding the disease better. This includes “not only the disease-causing genes, but also the background that all of this is predicated on.” Specific information can include “what if any other genes are making this disease worse for [the person] or are there are other genes that actually are preventing less severe disease?”
Ultimately it allows us to learn if you will “get a pass” on a certain disease or if you will find great success from a certain treatment.
Two important pillars of GA are education and awareness. When you stop to think about the two, they are paramount when it comes to most everything that is important to us as members of society.
Terry explained, “We take this basic community from the ground up perspective.” What does this mean? “We believe that each person is the expert of their own experience… and we don’t really have anything to tell people about their experience.”
It’s more about “hold[ing] the space open, open[ing] the space, so people can find their way” with living with genetic disease. The goal is for us to ask what individuals “might need to know, other than what they experience, so they can have a better perspective on how to manage disease, how to treat disease.”
It doesn’t stop there – GA wants to know from individuals and communities, “What is important to you?”
If you suffer from migraine and want your voice heard, GA and its tech partner, Luna, is currently conducting a study. It is via a “prioritization setting system,” Terry said, whereby people can say:
- “Here are the things that migraine represents for me,
- Here are the things I need, and
- Here are the sorts of things I wish the research community would pay attention to.”
And then GA and Luna present what is learned through the study in hopes of the research community prioritizing those items, thereby giving those who live with migraine answers to much-needed questions.
Luna’s Migraines and Severe Headaches Study launched in June 2022 in collaboration with GA and Quality Metrics. “Migraines ranked in women’s top five priorities as highly important and highly underserved.”
“Dawn Barry, co-founder of Luna, explained to us that Luna’s Women’s Health Study (over 3,000 participants) was [created] to understand if there is a difference between what women rank as their top health priorities and the areas currently funded by the NIH (National Institutes of Health) for women’s health. GA collaborated with Luna on this because we believe it is critical to discover what people need.”
GA provided the following link if you feel comfortable sharing “your experience [in an effort to] help set priorities for managing migraines” – https://id.lunadna.com/referrer/migraine-honestmag?studyName=migraine.
Terry shared how passionate she is about this partnership “whereby communities can have a voice and we can revolutionize research.” She followed, “My desire is really to say ‘the people have a need and [should steer insofar as] recruiting the investigators and researchers, rather than some investigator came up with some idea and is recruiting the patients.’”
What an inspiring role Terry plays in today’s society. Her dedication is clear and her prioritization on the health of the individual is applaud-worthy. This is a classic example of when tough medical news hits home one person can very much make a difference, not only in their own family unit and social circle, but across the globe.
Your voice can and will make a difference.
GA focuses on a patient-centered approach to healthcare. We, the individuals, are best aware of our symptoms, our feelings, our needs.
Part of GA’s mission has been creating and implementing high tech and high touch programs across a multitude of communities. Terry explained no matter the size of the community, however you define it, or how it was formed, it is focused on helping your community, whether it consists of
- “a Facebook group,
- a gathering of friends that met at the church or soccer field,
- traditional advocacy corporations i.e. 501(c)(3)’s.”
Terry said that communities come to GA and ask:
- “How is it we can organize our community better?”
- “How can we communicate better?”
- “How can we understand the [individual’s] needs so we can meet their needs?”
A vital part of any community or organization is that the people, the patients, those who the organization was formed to provide for, stay at the forefront. There are many times when it gets flip-flopped, and the individuals get placed on the backburner while the organization focuses solely on its needs.
One of the endeavors that Terry is most proud of over the past two decades of running GA makes a profound difference to each and every person.
She spent 12 ½ years leading the coalition that resulted in getting The Genetic Information Nondiscrimination Act (GINA) passed on April 24, 2008.
GINA “is an important U.S. civil rights law that protects individuals from discrimination based on their genetic information.”** GINA was passed by the House and the Senate (with 95 votes for and 0 votes against). On May 21, 2008, President Bush signed the bill, thereby making it a law.
“GINA prevents health insurance companies and employers from requesting that people take genetic tests, prohibits health insurers from using someone’s genetic information to refuse insurance or charge higher prices, and also prohibits employers from hiring, firing and making other employment decisions based on their employees’ genetic information.”**
“You could test positive for a harmful variant in the BRCA1 gene meaning you probably – 80% chance – are going to get breast cancer … and [a health insurance company] can’t raise your rates or [an employer can’t] fire you because of that genetic test,” Terry explained.
When asked what advice she would like to offer individuals, families or caregivers that are struggling personally with a disease or are in their support circle, Terry said the following.
“The biggest piece of advice I have is to get support,” and that is not limited to just one form of support. While “medicine is important” Terry said that “figuring out what else do I as a person need in terms of support” can make a difference.
“Whether it is traditional kinds of help (like therapy) or more just in my support system – [such as] I need somebody to take the kids once a week; I need to somebody to have tea with once a week” or figuring out “that I don’t have to be completely on my own.” In some cases it might be that “[I’m] completely strong standing on my own two feet, [but would find it helpful to] really reach out” for support.
“That would be my biggest advice to anybody about any disease,” she said. “I think we are learning more and more that the interplay of genetics, environment, and everything else makes a very big difference for understanding disease.”
I hope you take some time to review GA’s patient-focused tools as well as take part in its support groups or studies to improve the health of society members.
GA provided the following information on its Wellbeing Support resource:
Life is stressful, and so much more so for those of us who live with debilitating pain. Genetic Alliance has worked for decades with individuals who suffer. During these years, we have developed ways to support individuals in finding respite from suffering through simple awareness practices. We offer workshops lasting an hour, or a day, or a weekend to tap into new and renewed sources of support. The tools we offer are portable, and can be used as you encounter pain. They can provide a haven when it feels like it is just too much. We offer these workshops to individuals and to groups. Contact Sharon Terry at firstname.lastname@example.org.
Coming next: Whose role model are you?