For those living with Alpha-1, being an advocate often means being a voice for themselves, their loved ones, and others who share the same rare condition. Alpha-1 is a genetic disorder that can cause severe lung disease, liver damage, and even other systemic health complications if left undiagnosed and untreated. As the condition is often misunderstood or misdiagnosed, those affected by it can find themselves isolated in their journey. Advocacy within the Alpha-1 is a way to change this narrative. Learn about advocacy from one of the Alpha-1 community’s most passionate supporters, Peggy Iverson, as she shares her own advocacy journey, and find tips to help you get started as an Alpha-1 advocate yourself.
Peggy Iverson’s Alpha-1 Advocacy Story
Diagnosed with Alpha-1 relatively early in life – at the age of 21 – it was after her first experience at an Alpha-1 National Conference in 2007, that Peggy Iverson fully devoted herself to supporting her fellow Alphas and raising awareness about Alpha-1. From her early days as a nervous conference attendee to becoming a key advocate in her local Iowa community and beyond, Peggy’s journey offers valuable lessons and inspiration for anyone living with Alpha-1.
How It All Started
Peggy still very clearly remembers walking into her first Alpha-1 National Conference, a moment she still acknowledges as the beginning of it all. Despite her nerves and uncertainty, she was welcomed with open arms by “two amazing Alphas” who took her under their wings.
“I just didn’t know who to talk to and I didn’t know where to go, and that was probably evident on my face. They shared with me what I ought to, who I ought to talk to, and what booths I ought to visit. I’ll never forget those two and what they did for me,” Peggy shared.
Their support made a lasting impression, and she vowed to one day provide the same kind of guidance to others. “It was in my heart to dream of helping some other Alpha in that same way one day, just as they had helped me.”
Think Globally, Act Locally – Making Connections
Inspired by the support she had received, Peggy decided to take action locally. She wanted to connect with fellow Alphas in Iowa and offer them the same support that had been so instrumental in her own life. This led her to establish a local support group, a decision that Peggy considers one of the best she’s ever made.
The Alpha-1 Foundation provided invaluable resources and mentorship in the process, including the tools to effectively conduct meetings and connect with others in the community. Peggy initially felt uncertain about taking on the role of a leader, but with encouragement from the Foundation, she found the confidence to step up.
“They provided me with the tools of how to conduct a support group meeting, and how to reach out to my local Alphas,” she explained. With their help, Peggy established long-term relationships with local Alphas, many of whom shared the same pulmonologist and similar experiences. “I have long-time relationships with people locally that are Alphas,” she said, a testament to the lasting bonds forged through the group.
Peggy’s drive to make a difference also led her and her husband to organize a local fundraiser in Iowa, dubbed “Get the Scoop on Alpha-1.” Inspired by a similar event in Denver, where Judy Simon holds a yearly ice cream fundraiser, Peggy saw the opportunity to create a fun event that would bring the community together, especially benefiting the children affected by liver disease. “I was really interested in making sure that we also included liver-affected kids, and I wanted to make sure it was an event that the kids would think was fun too.”
Peggy currently serves as vice chair of the Alpha-1 Foundation’s Board of Directors and participates in the Celtic Connection Committee which hosts the annual Celtic Connection in Boston, MA where Alphas from around the world gather to celebrate Irish heritage and connect with their fellow Alphas.
AlphaNet, which allows Alphas to connect with Alpha-1-affected peers in their region, has also played a key role in Peggy’s advocacy. After being prescribed augmentation therapy and receiving guidance from her first AlphaNet Coordinator, Doug Turley, Peggy was motivated to become even more involved. “He educated me about why it was so important for me to follow my doctor’s advice, and why my life would be extended by doing that,” she recalled. Doug’s support calmed Peggy’s fears and set her on the path to becoming an AlphaNet Coordinator herself.
In 2011 she was approached by another AlphaNet Coordinator, Barb Pusey. “She recognized that I had a real passion for Alpha-1 and really cared about Alphas,” Pegg y said. After an interview, Peggy was offered the Coordinator position, and it was, in her words, “the best decision ever.” Her work with AlphaNet deepened her commitment to helping others in the community, and she continues to offer guidance and support to those living with Alpha-1, now as AlphaNet’s Program Manager.
According to Peggy, one of the most powerful aspects of the Alpha-1 community is the sense of togetherness. She cherishes the relationships she has built with other Alphas and highlights how crucial it is for individuals to connect, whether it’s through virtual meetings, national conferences, or local support groups. “Having the privilege of talking to Alphas every day, and connecting in a very unique way, I have learned so much about all the unique stories,” she shares.
Spreading the Word in the Worlds of Healthcare and Policy
As an Alpha-1 advocate, Peggy is deeply committed to raising awareness about the condition, especially among healthcare providers who may be unfamiliar with it. She emphasizes the importance of educating others about this rare genetic condition that can lead to severe lung and liver disease.
Through her years of advocacy, Peggy has witnessed the ongoing struggles that many Alphas face, particularly when it comes to healthcare policies. One of the biggest challenges remains the cost and accessibility of augmentation therapy. This life-saving treatment, which helps to replace the missing Alpha-1 antitrypsin protein, can be difficult to access, especially for those on Medicare. Peggy passionately advocates for policies like the John Walsh Act to ensure that home infusions remain accessible and affordable for all Alphas, especially as they age and face the challenges of navigating the healthcare system.
One of Peggy’s most powerful tools in advocacy is sharing her personal story—highlighting how the condition has impacted her life, while maintaining a positive outlook. Peggy’s advice for fellow advocates is to find their own “elevator pitch”—a concise way to explain Alpha-1 and its effects, and how they were personally affected. By sharing their personal experiences in a relatable, positive manner, she believes individuals can better connect with others and raise awareness about the condition.
Message to Friends and Family
Family members and caregivers also play a vital role in supporting Alpha-1 patients and their advocacy efforts, including by being tested for Alpha-1 themsleves. Her own husband, who has supported her throughout her advocacy journey, helps her organize local fundraisers and has been a constant source of emotional and logistical support. “I wouldn’t have been able to do it without him,” she said. Her message to caregivers is clear: “Become educated about the condition and support the Alpha in your life.”
Looking Toward the Future
Peggy is optimistic about the future of Alpha-1 advocacy. “I think we are going to see incredible opportunities in detection of alpha-1 antitrypsin deficiency,” she predicted. She hopes that better detection practices will help identify individuals with Alpha-1 earlier in life, allowing them to receive treatment and support much sooner. Peggy’s own experience of being diagnosed early serves as a powerful example of the difference early detection can make. “I am quite sure I wouldn’t be alive to see age 71 if I hadn’t received that diagnosis at such a young age,” she said.
She is also passionate about participating in clinical studies, helping to advance potential treatments and cures for Alpha-1. After participating in the National Institutes of Health’s Alpha-1 study in 1985, where she connected with an Alpha-1-aware pulmonologist for the first time, she has remained committed to clinical research.. “There are so many potential cures in the pipeline,” she said, underscoring the importance of contributing to research in whatever way possible.
In her eyes, the fight for greater awareness and better healthcare for Alpha-1 patients is far from over, and she remains committed to being part of the solution.
Peggy’s work as an Alpha-1 advocate has left an indelible mark on her community. Whether leading a local support group, raising awareness through fundraisers, or offering advice to newly diagnosed individuals, Peggy continues to inspire and empower those living with Alpha-1. Her message to others in the Alpha-1 community is simple: “Stay positive and always remember – you are not alone.”
If Peg’s story has inspired you to begin your own advocacy journey, keep reading below for advice to help you get started.
Your Quick Guide to Alpha-1 Advocacy
Understanding Alpha-1 Antitrypsin Deficiency
First thing’s first, it’s crucial before you start your advocacy journey to have a full understanding of what alpha-1 antitrypsin deficiency is and how patients are affected. Alpha-1 antitrypsin deficiency (AATD) occurs when the body does not produce enough of a protein called alpha-1 antitrypsin (AAT). AAT plays a crucial role in protecting the lungs from damage caused by enzymes released during inflammation. When AAT levels are low or absent, the lungs are more vulnerable to damage, leading to chronic conditions like emphysema and chronic obstructive pulmonary disease (COPD). It also affects the liver, as the liver produces AAT, and in some cases, liver disease may be the primary manifestation.
- Raising Awareness
A crucial part of advocacy is helping others understand the complexities of Alpha-1. Many people with Alpha-1 go undiagnosed for years, as the symptoms often mimic other, more common conditions. “I was fortunate enough to be diagnosed relatively early in life, and I know that helped me make informed decisions about my health, but so many others are not as lucky. Spreading awareness can help others seek and find the diagnosis they need to improve their lives” says Peggy.
To raise awareness, advocates can:
- Speak at local events to educate the public.
- Use social media platforms to spread knowledge and connect with the Alpha-1 community.
- Participate in health forums or support groups to offer insights into living with Alpha-1.
- Share personal diagnosis stories – By sharing personal stories, advocates help shorten the diagnostic timeline for others, facilitating earlier detection and treatment.
- Promoting Early Diagnosis
One of the major issues with Alpha-1 is the delayed diagnosis. Symptoms often don’t show up until later in life and are frequently misattributed to other conditions. Early diagnosis is critical to start treatment that can prevent further lung and liver damage. “We need to make sure healthcare providers are aware of Alpha-1 when diagnosing chronic lung issues,” Peggy advises.
As an advocate, you can:
- Encourage family members to get tested if they exhibit signs of Alpha-1 or have a family history of the condition.
- Work with healthcare professionals to ensure Alpha-1 is considered when diagnosing chronic lung or liver conditions.
- Navigating Treatment and Support Options
While there is no cure for Alpha-1, treatments such as augmentation therapy (replacing the missing alpha-1 antitrypsin protein) and liver transplants in severe cases can help manage the disease. Advocates like Peggy provide invaluable support by guiding others through the maze of treatment options, insurance challenges, and logistical difficulties.
“Sometimes it’s overwhelming, but you have to keep pushing for the care you need. I help others find the resources I wish I had when I was first diagnosed,” Peggy reflects.
You can:
- Help others find resources such as financial assistance programs, clinical trials, and specialized doctors.
- Be a support system for those newly diagnosed, offering advice on coping with the challenges of the condition.
- Collaborate with healthcare providers to ensure access to the most up-to-date and effective treatments.
- Organizations like the AlphaNet and the Alpha-1 Foundation offer essential resources for patients and caregivers.
- Fighting for Policy Changes
Advocacy also means pushing for systemic changes in public policy. Advocates can support individuals while also fighting for better access to healthcare, research funding, and public education on rare diseases. Peggy believes that policy change is necessary for lasting improvement. “We need to ensure that everyone living with Alpha-1 can access the treatments and support they deserve. It’s a fight for fairness and equality,” she says.
Actions include:
- Lobbying for legislation that funds research for rare diseases and improves healthcare coverage for those living with Alpha-1.
- Partnering with patient advocacy groups to push for insurance coverage of essential treatments.
- Organizing campaigns to raise awareness among lawmakers about rare conditions like Alpha-1.
- Fostering a Sense of Community
One of the most powerful aspects of being an Alpha-1 advocate is the sense of belonging it fosters. The journey of living with a rare condition can be isolating, but advocates help create a network of support where individuals can connect, share experiences, and offer each other strength. “I can’t stress enough how important it is to have a support system. I wouldn’t be where I am today without the community I’ve found through advocacy,” Peggy says, reflecting on her own journey.
As an advocate, you can:
- Host or attend events that bring people with Alpha-1 together, either virtually or in person.
- Create safe spaces for people to share their struggles and triumphs.
- Encourage conversations about the mental and emotional toll of living with Alpha-1.
Advocacy Makes a Difference
Being an advocate for Alpha-1 is about much more than raising awareness—it’s about being a beacon of hope for those who feel unheard, pushing for earlier diagnoses, promoting access to better treatments, and driving change that will benefit future generations. Whether you’re sharing your personal story, working with healthcare providers, or advocating for policy reform, the work of an advocate makes a lasting impact.
“The journey is tough, but together we can make sure no one else has to go through it alone,” Peggy concludes. “We are stronger when we stand together and speak out.”
By joining the Alpha-1 advocacy movement, individuals can ensure that no one living with the condition is left to navigate their health challenges in isolation. With awareness, early diagnosis, better treatments, and systemic change, the future for those with Alpha-1 looks brighter than ever.