The Future of PCOS Treatment: Precision Medicine PCOS Program

Sonya Satveit is a survivor of infertility, miscarriages, PMS, and Post Partum Mood Disorders (esp Anxiety).  Fortunately she was able to solve all of her problems by balancing her hormones but had been more than a decade long journey of ups and downs.

She founded HormoneSoup.com in an effort to raise consciousness around hormone issues in women and spark conversation about using bio-identical hormones to treat issues such as miscarriages, infertility, postpartum mood disorder, and PMS.

Her newest project, Precision Medicine PCOS Program, is the first of its kind. Here she is to tell us more about this groundbreaking initiative that’s even got the support of the President of the United States.

Sonya, can you explain what Precision Medicine is?

So if we look at medicine today, it takes a one-size-fits-all approach and is focused on “standards of care” for the population in general.  For example if you get diagnosed with something like PCOS you’ll be offered a treatment similar to that of every other woman diagnosed with PCOS.

Precision medicine, in contrast, takes a customized approach to your health by looking at your specific genes and their interactions, your specific environment and lifestyle and then tailoring prevention and treatment to you. Your healthcare is personalized to you and so the term Personalized Medicine is also being used.

What involvement has the US Government had in Precision Medicine?

President Obama announced the Precision Medicine Initiative in an effort to bring precision medicine to many aspects of healthcare.  The PMI have stated that in the short term, they plan to bring a precision medicine focus to cancer research while over the long term the intention is to gather the genetic information from 1 million Americans who will volunteer to contribute their biological data to research.

Tell us about the Precision Medicine PCOS Program!

Our myAva Precision Medicine PCOS Program is the first initiative to bring precision medicine to women’s health specifically focused on PCOS! Precision medicine is in the early stages and there is currently no precision medicine protocol designed specifically for women diagnosed with PCOS.   We know women with PCOS have trouble getting answers and there is so little funding for research.  Women with PCOS have grown tired of waiting for better diagnostic and treatment options.

For the first time ever we are going to be taking a comprehensive molecular picture of each woman so we can personalize her care rather than take the cookie-cutter approach to her health.

We are gathering and analyzing a lot of data for each woman including her genetic and transcriptomic profile, 200+ proteins, 200+ metabolites, as well as her gut and vaginal microbiome.  We are gathering activity tracker and sensor information and because we believe in a truly patient centric approach we will be gathering data from the patient herself such as how she feels about her quality of life, etc.  The benefit is that we will start to track changes over time, which I think is empowering to a woman to have access to ALL of her own data and lets her participate fully in her own care.

The goal of our Precision PCOS Program is to optimize the health of each woman by detecting early stages of disease, informing interventions (hopefully before the disease such as diabetes or cardiovascular disease becomes chronic) and identifying prevention strategies (ie: nutrition, fitness and lifestyle interventions) based on each woman’s own molecular profile.   It’s a complete customization of healthcare.

Sonya Satveit, founder of Precision Medicine PCOS Program.

Sonya Satveit, founder of Precision Medicine PCOS Program.

 

Why did you choose to focus on PCOS for your first project?

A couple of things impacted my decision to focus on PCOS for our first program.  Through my experience blogging at Hormone Soup I have made vast connections in women’s health and developed an amazing network that involves patients, patient advocates, providers and organizations, including the PCOS Community.  I have come to believe that there is no other patient community more underserved than the PCOS community.

Over the years I have done a ton of research into women’s endocrine health as well as the latest innovations in medicine and I became particularly fascinated with precision medicine.   Advances have already led to powerful new discoveries and that excites me!  This is a transformation in how we look at disease and how we look at health and is just at the beginning.  I think PCOS patients deserve to be at the forefront of this kind of healthcare.  We know there are genetic underpinnings to PCOS, it is both a metabolic and endocrine health issue and I think it really is a perfect use case for precision medicine.

What has been the reaction with the pilot group of women so far?

It’s been amazing, truly Angela.  We are close to finalizing our initial group of 10 Atlanta area women with PCOS who are going to make up our Patient Advisory Panel.  It is imperative to me that a healthcare program has the input of the people who are going to use it!  As we began to recruit patients, I have heard story after heartbreaking story from women.  These women have been through so much and they are so excited that we are attempting to change the status quo in the treatment of PCOS.  A lot of PCOS patients have felt ignored for so long and are more than willing to get involved both as patients and advisors and share their data and experiences to help the entire PCOS Community.

When you expect to see your first results?

Once we start the program we will see our first results in 90 days.  We will be analyzing the women’s molecular profile every 90 days so we will begin measuring any changes based on interventions at 180 days and beyond.

How do you anticipate the Precision Medicine PCOS Program will change the future of health care for women with PCOS?

Once we get through a couple of cycles of results with the first 10 women and have a chance for them to advise and help us “get it right”, we will begin to scale the program and offer it more broadly.  To me it’s important to deliver what will be good for women but it’s also got to work for physicians and other healthcare providers.  If we can make it good for patients and good for doctors then we have a win-win situation.

I really believe in the power of the patient because that’s how I got started and look where it’s taken me.  If we support one another and raise each other up we can effect some significant changes.  And change is going to come from us, the patients – there’s no calvary coming to save us – we have to work together.

“I want to create a movement in women’s health by raising the bar on the standard of care for women with PCOS.”

I think this is achieved by striving to achieve a new level of patient centered healthcare for women that includes the latest innovations happening in healthcare.  Based on what I’m hearing from women with PCOS, even slight improvements are significant for them.  My vision isn’t small and with the amazing team of collaborators working with me and the support I’m receiving from the PCOS community, we have the potential to change the future of healthcare for women with PCOS!

Anything else you would like our readers to know? Any way others can support your initiative?

I’d love for your readers to stay connected by signing up for updates about our Precision Medicine PCOS Program at www.myava.com or reach out to me directly at www.HormoneSoup.com.

 

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Comments (4)
  • Kylie

    May 5, 2016 at 3:36 pm

    Hi i was just wondering where i can purchase the pcos workbook and how much does it cost?

  • Angela Grassi

    May 7, 2016 at 9:06 am

    Kylie, we sell The PCOS Workbook as well as other PCOS books on our website: http://www.pcosnutrition.com/store/

  • Erin

    June 1, 2016 at 1:59 pm

    I’m in Atlanta! How do you participate?

  • Angela Grassi

    June 2, 2016 at 8:17 am

    Contact Sonya to find out if they are still recruiting participants: http://hormonesoup.com/

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