Social Impact Heroes: How Ashaki Lloyd and Horizon Therapeutics Are Helping People With Rare Diseases
…Establish rare disease advisory councils in all 50 states. Rare disease advisory councils are advisory bodies that give the rare disease community representation in state government. With membership that is representative of the community, from patient advocates to providers, these councils help states better understand the challenges that rare disease patients face. As a result of councils’ input, legislators are better equipped to address the diagnostic, treatment, and access issues that are specific to rare disease patients. To date, only 14 states have enacted legislation to establish rare disease advisory councils.
As part of my series about companies and organizations making an important social impact, I had the pleasure of interviewing Ashaki Lloyd. She currently serves as policy analyst, state government affairs at Horizon Therapeutics, where she is responsible for monitoring and analyzing policies across all 50 states that have the potential to impact patient access and Horizon’s ability to develop medicines for patients. She first joined Horizon in 2018 as a strategic communications intern, government and public affairs. Before joining Horizon, Ashaki interned for the New York Times’ Science desk, as well as on Capitol Hill for Congressman Hakeem Jeffries (D, NY-08), analyzing policy on healthcare, housing, criminal justice and census issues. A graduate of Columbia University, where she majored in human rights and specialized in political science on the pre-med track, Ashaki’s goal is to become a physician.
Thank you so much for doing this with us! Can you tell us a story about what brought you to this specific career path?
What sparked my interest in health policy, specifically, were the racial disparities in health outcomes and healthcare access that I witnessed in my own community. I grew up in New York, a city considered to be well-resourced, but access to these resources was largely based on location. Data consistently shows that poor health outcomes, from higher maternal mortality rates to greater rates of hospitalizations for childhood asthma, are highest in areas where people of color predominantly reside. Essentially, your zip code may predict how healthy you are likely to be.
But this data was also my lived experience. While an undergraduate student at Columbia University, I had the benefit of student insurance. However, the summer following my freshman year, I experienced a temporary lapse in coverage due to financial aid holdups. It was sobering to realize I could be fully insured while living on campus in zip code 10027, but be uninsured when I returned to my zip code of 11236 for summer break. It all came back to access. In that moment of realization, I resolved that I would make it my mission to fight for fair and equitable health systems, using health policy as a tool to do so. This mission influenced my choice in major, internships, and my decision to join Horizon as a policy analyst. The company’s dedication to developing treatments for rare disease patients, a largely underserved patient population, match my own values.
Can you share the most interesting story that happened to you since you joined your company or organization?
It would have to be joining Horizon as the first-ever policy analyst for state government affairs. I initially came to the company as an intern, supporting the communications efforts of our government and public affairs team. During this time, I learned about the ways the team was ensuring that the needs of the 30 million Americans living with a rare disease are reflected in federal and state policy. With over 7,000 distinct rare diseases, it’s challenging for policymakers to have full understanding of the entire community. As a result, it’s crucial that laws and regulations that can impact the community are developed with input from stakeholders who understand the unique diagnostic, treatment and access obstacles that rare disease patients face.
I now support our state team as we continue to provide that input. In my role, I assist the team by monitoring and analyzing hundreds of bills across all 50 states that have the potential to affect patient access, and our ability to develop and bring forward life-changing therapies. It’s also worth mentioning that my manager, and Horizon in general, has been supportive of the fact that I am studying for my MCAT as a full-time employee and eventually plan to attend medical school. This support of my future career aspirations reaffirmed that Horizon is the right place for me.
Can you share a story about the funniest mistake you made when you were first starting? Can you tell us what lesson you learned from that?
During my internship at the New York Times’ Science desk, I was assigned to report on technology that discovered evasive black holes. After completing my first draft of the article, I wanted a second opinion. I just so happened to be sitting next to reporter, Dennis Overbye, and peered over his desk to ask, “How much do you know about black holes?” Immediately, a confused expression played across his face. Dennis had been reporting on physics, cosmology and our universe since I was 5 years old. Of course, he knew about black holes! He was kind about it though, offering to take the first look at my story and providing tips to improve my draft. Black holes aside, I had been following Dennis’ reporting on the planet, Pluto, that summer. But on that day, I learned the importance of becoming fully acquainted with your colleagues’ work before meeting with them.
Can you describe how you or your organization is making a significant social impact?
Commitment to community is a central part of Horizon’s company culture. For us, making a positive social impact in the communities where our employees live and work is just as important as our company’s overall success. This commitment is seen in a number of our company initiatives. Horizon’s patient support programs provide financial assistance so that patients can access our medicines, regardless of their ability to pay. Through our corporate social responsibility efforts, we give back to communities from Chicago to San Francisco.
Most recently, on the heels of our nationwide reckoning with racial injustice, Horizon took a stand against anti-Black racism. The company also pledged support to organizations addressing racial inequality, including the National Urban League, Equal Justice Initiative, The Bail Project and the NAACP Legal Fund. It’s reassuring to work for a company that not only spoke up to denounce racial injustice, but followed it with action as well.
Can you tell us a story about a particular individual who was impacted or helped by your cause?
It is difficult to name just one individual, due to the nature of my role. All rare disease patients benefit from informed state and federal policies that take into consideration the specific needs of rare patients. In many ways, the collective work of our government affairs team positively impacts the lives of the 1 in 10 Americans living with a rare disease.
Are there three things the community/society/politicians can do to help you address the root of the problem you are trying to solve?
I am most passionate about addressing health disparities and barriers to healthcare access. This is a complex, decades-old issue that requires many components to be resolved, but here are a few actions that are relevant to my industry:
- Establish rare disease advisory councils in all 50 states. Rare disease advisory councils are advisory bodies that give the rare disease community representation in state government. With membership that is representative of the community, from patient advocates to providers, these councils help states better understand the challenges that rare disease patients face. As a result of councils’ input, legislators are better equipped to address the diagnostic, treatment, and access issues that are specific to rare disease patients. To date, only 14 states have enacted legislation to establish rare disease advisory councils.
- Ensure health insurance coverage for the uninsured. It’s no secret that the coronavirus pandemic has led to unprecedented job loss. According to a recent report by the nonprofit Families USA, 5.4 million Americans experienced job loss between February and May of this year, which consequently for many, also resulted in the loss of their health insurance coverage. States must ensure that those who are uninsured have access to care through services such as Medicaid. But as states face their own budget constraints as a result of the pandemic, it’s up to the federal government to provide greater financial relief to address this issue.
- Go beyond data collection, and include minority communities in coronavirus relief efforts. There has been an obsession with data collection on COVID-19, and for good reason. But what’s been revealed from the data that has been collected is that historically underserved communities, such as Black and Latino populations, have been most negatively impacted by the pandemic. This is not surprising to our communities, nor public health experts for that matter, as it replicates existing health disparities. As the country works on rebuilding our public health infrastructure, there is an opportunity to intentionally include the communities who have been most at-risk and most impacted in the solution-making process.
What is one thing you wish someone told you when you first started, and why? Please share a story or example.
Networking is a way to build and maintain “professional friendships.” For young professionals, the concept of networking seems abstract and is often intimidating. We’re usually told to “get out there and network!” with little explanation of what that actually means. I’ve come to value networking as a way to develop professional friendships with people you can learn from, support and share opportunities with in mutually beneficial ways. Had networking been explained to me in this way, I would have been more enthusiastic about it earlier on. In fact, networking with this approach is what connected me to a recruiter in Washington, D.C. who would eventually introduce me to the internship at Horizon which has led to my current, full-time role.
You are a person of enormous influence. If you could inspire a movement that would bring the most amount of good to the most amount of people, what would that be? You never know what your idea can trigger. 🙂
This is such a thoughtful question. If I were to inspire a movement of this magnitude, it would be to repurpose abandoned and habitually unoccupied buildings in order to provide housing for the unhoused, ultimately ending houselessness in our country. According to the U.S. Department of Housing, 567,715 people in America were houseless as of January 2019. This included individuals who were unsheltered, in transitional housing or in emergency shelters — many of whom self-reported existing health conditions.
I’ve lived in major cities from New York to Baltimore, and the prevalence of abandoned properties is as glaring as the visible populations of houseless individuals. In response to the pandemic, some businesses are deciding to permanently shift to remote workplaces, leaving more commercial spaces unoccupied. How incredible would it be if these kinds of spaces were transformed to house those who do not have houses of their own? Having experienced housing insecurity myself, this is a cause that is personal to me. It’s a movement I believe will accomplish the most amount of good.
Is there a person in the world, or in the U.S. with whom you would like to have a private breakfast or lunch with, and why? He or she might just see this, especially if we tag them. 🙂
I would be ecstatic if given an opportunity to meet with the great Dr. Anthony Fauci. Dr. Fauci quickly became a household name as a member of the country’s coronavirus response team, but he has been one of the leading experts on infectious diseases in the U.S. for several decades. As an aspiring physician, it would be an honor to meet and learn from him. We are also both Brooklyn natives, so I’m sure we would have much to discuss being from the greatest borough in New York City.
Can you please give us your favorite “Life Lesson Quote?” Can you share how that was relevant to you in your life?
“You can’t change life, but you can change lives” is a personal quote of mine. It serves as an affirmation, reminding me that despite life’s inevitable challenges, we can still make a positive impact in the lives of others. It’s as encouraging for me today as it was in 2010.
How can our readers follow you on social media?
Your readers are more than welcome to follow me on LinkedIn.