Kimberly Haugstad of Global Genes

​While fairly new to the role of CEO of Global Genes, having joined them in September of 2019, Kimberly Haugstad is certainly not new to the world of rare disease having been CEO of The Hemophilia Federation of America for 11 years. Kimberly talks about her personal and professional journey with RARE and her hopes for Global Genes in the coming years

CEO Series: meeting the beating hearts behind the RARE brands

1.

What made you want to move into the wide world of rare disease, and then specifically Global Genes, and what did that journey look like?  ​

My original why is my son. I have a child with severe haemophilia, and so entered the rare disease space about 13 years ago. I started volunteering because I was really interested in what the future held for my son. At that point in the US, there were lifetime caps on pre-existing conditions and the Affordable Care Act hadn't passed and we had some real challenges with my son’s medication. My husband and I were looking at which one of us needed to make a major job change to get a new insurance plan because we had about two years left before we'd hit our cap.
The Hemophilia Federation of America approached me about coming on board as their CEO and helping them really build out the organisation. I thought, "Well, maybe I'll give this a try for a short period of time." I was there for 11 years in the end, but what happens in rare is you fall in love beyond your child. You fall in love with the other families who are going through the same stages you have been through, or the adult heroes willing to participate in new clinical trials to get drugs to market that would benefit my child. It is really compelling. 

The sort of endurance, resilience and tenacity, and the ability of rare patients to just survive is utterly inspiring every day.
​
I was then approached by a recruiter who introduced me to Global Genes. I knew in the next one to three years I was probably going to leave haemophilia for my own professional growth but I wasn't yet looking. However, I learned more about the organisation, and I caught the bug! To be able to be a part of this broader journey of people globally, in an organisation very similar to the one I came from where the focus truly is on the patient, in a safe space, is so rewarding.

2.

What do you anticipate will be the biggest challenges and opportunities for your organisation in the next two years?  ​

 I think opportunity and challenge both lie with partnerships. I think that we have so much potential in rare right now. There's a great deal of opportunity, and frankly, a lot of interest. We are obligated to take this on and go hard and go fast.
​
We need to build awareness as an organisation. It is really important to be accessible everywhere, but we don't need to do everything ourselves. Sometimes there are people who feel competitive and I'd really like to break that down and role model how partnerships are an opportunity, the way we can operate to achieve the greatest good. We want to demonstrate that you can still be you as an organisation but by partnering you exponentially grow your reach. We are Global Genes—we need to be global. In order to truly scale, it is imperative that we have partnerships. If you see someone doing something really great, join them, celebrate them, promote them

3.

What is your proudest moment in your career thus far?  ​

I am still so new at Global Genes, I think right now it's a haemophilia moment for me. A couple of years ago, we were approached by The AIDS Grove in San Francisco. The AIDS Grove is an area of parkland in the Golden Gate Park in San Francisco, given to the AIDS community to serve as a memorial. The AIDS Grove had come to understand, that in the world of AIDS, haemophilia was not well represented in The Grove. The haemophilia story in the AIDS narrative is incredibly powerful and really helped drive the movement towards really recognising and understanding the disease and ultimately having therapies.

We worked with The Grove, and it was an incredibly beautiful moment when the Hemophilia Memorial was unveiled. It is absolutely marvellous, it is the most beautiful park, and having the opportunity to have haemophilia remembered was so important. To not be forgotten in that greater narrative is so powerful.
​
This then led to us connect with the curator of science and medicine at the Smithsonian, the national American history museum in Washington, D.C., and we made multiple donations of patient haemophilia artefacts. This means the historical remembrance of the haemophilia story, which for me is very important because of my son, will never be forgotten. It feels incredibly powerful that we've been able to accomplish both the visual memorial and the documentation of the archival memorial. Those are my proud little moments.

The beautiful hemophilia memorial in the AIDS Grove

4.

What and who are your personal and professional inspirations and why?  ​

I would always say my son who faces his pain with a fierce and conquering attitude. I would also say strong women. I don't want to pick any one woman. I so admire and am inspired by strong women who aren't afraid to keep pushing to make things happen.

5.

What advice would you give someone considering working in the rare disease space?  ​

I would say that someone coming into the rare disease space ought to listen first. There is a lot happening and duplication of efforts may not be necessary. Do their research, really look at the landscape, and do not be afraid to partner. Sometimes the best way to make an impact quickly is to jump in and help make something already underway stronger with your support, versus always starting something new.

6.

Do you think the government does enough for the rare disease community at a local and central level, and what gaps do you see currently or emerging?  ​

No. Where do I start? Firstly, these ultra-rare and rare conditions are different. It can take so much longer to get diagnosed, and getting care, regardless of what country you live in, when you're undiagnosed, is an incredible challenge. People can get caught in limbo. In the U.S. it's also an issue getting access to medications based on our complicated healthcare system. If there is a drug that would potentially work for you but you're undiagnosed, then potentially your insurance company may not pay for it or you may need to appeal a decision and be forced to petition multiple times to get an exception. The stress and financial impact to patients is incredibly deep and frustrating.
For example, haemophilia is very expensive and I have seen multiple instances where insurance companies and the U.S. government’s Medicaid system advise parents, "What you really need to do here is get a divorce and one of you quit your job. Because then mommy or daddy, whichever one doesn't work, might qualify for Medicaid. You’ll need to live in poverty but your child may be able to get his medicine." I’m using my haemophilia example here but insert new disease and it’s the same. The healthcare system simply isn’t built for rare or chronic disease, so families are forced into stressful and limiting workarounds to obtain life-saving treatment. It is crazy but it's real.

7.

What would you say are some of the biggest motivators for your employees?   ​

It never ceases to amaze me how small but mighty the teams behind charities are. I think people just assume that there are these massive teams of 70-100 people in an office. I think every one of our team members is ten people in one. They are amazing. A conference such as the Global Genes RARE Patient Advocacy Summit provides inspiration that carries through the rest of the year!
​
Everyone that works for us, regardless of their connection to rare disease, has a passion and came to us looking to work for an organisation that allowed them to contribute something to the community, to the world around them. We might not be doctors saving lives, but we can help deliver a message and drive change. And it’s great to see families meet each other. They might meet the first person they have ever spoken to with their same disease and seeing that happen is beautiful.

Kimberly with our Editor, Nicola Miller, at Global Genes Rare Patient Advocacy Summit, September 2019 ​

8.

What are the toughest parts of being a CEO, and conversely what are the most rewarding?   ​

I think the toughest thing is deciding what you can't do. There are only so many hours in a day, and the team here is less than 30, so there are many opportunities that we just can't get to yet. But I think that's the opportunity, too. All that untapped exciting possibility!

9.

What would be your one wish for Global Genes for the year ahead?  ​

I am really excited about our expanding scope and commitment to broaden our reach to all families living with rare disease wherever they may live. Rare is everywhere and there are rural families, urban families, isolated families living in countries around the world, people from every walk of life that need support and we are dedicated to being here for them. This takes a team but also technology and innovative strategies and partnerships which we are solidifying now to be the inclusive organisation that brings rare together.

10.

If you weren’t CEO of Global Genes, what was Plan B? What did your 10-year-old self want to do as a job?    ​

If I wasn't here, I had a plan to do something entrepreneurial. Before my son was diagnosed, I worked in technology, and then I worked in the investment world for a while and had my own consulting company. I grew up with strong female role models that always set the expectation that a woman does what she needs and wants to and so my 10-year-old self definitely had big ideas and they all were about being in charge of something. I never envisioned I would end up so closely tied to health, health equity, research, science or technology but it is exactly where I need to be and what I absolutely love.

To find out more about the work of Global Genes please visit
​www.globalgenes.org