Patient’s Corner: Living with Chronic Illness Vol. 2

By Dorothy Leone-Glasser

I met Mapillar Dahn and the MTS Sickle Cell Foundation, Inc. at our Rx in Reach GA Coalition Capitol Day. She was excited to participate in our event and had a table set to distribute Sickle Cell Awareness material and to engage visitors, attendees and legislators on the challenges of living with and caring for patients with this illness. She is guiding others to participate in understanding and conquering Sickle Cell Disease. I wanted you to know Mapillar and her journey as she continues her crusade to dispel the myths and ignorance surrounding the devasting sickle cell disease. 

Mapillar Dahn founded MTS Sickle Cell Foundation, Inc., a non-profit organization, to bring awareness to sickle cell disease and provide support to families affected by Sickle Cell Disease (SCD). Since its inception in November of 2015, the foundation has implemented many initiatives to assist sickle cell families giving them a community of healing and hope. MTS Foundation has sponsored over 100 children attending week-long summer camp, organizing health fairs, helping families avoid eviction and disconnection of vital utilities while conducting outreach visits to hospitalized sickle cell patients. The MTS Foundation works to spread sickle cell awareness and support clinical trials reaching over 20 million people in the United States and Canada.

SCD is an incredibly complex genetic blood disorder that impacts 100,000 Americans and millions more around the world. Because it is a blood disease, it’s complications can be felt anywhere blood flows in the body. A person can go blind from it, have a stroke, have organ damage, experience excruciatingly painful episodes called crises, and even die from its complications. Sickle Cell is an invisible disease that many outside of the SCD community, simply do not understand. This misunderstanding and a general lack of education around SCD has caused many myths and misconceptions about the disease to fester and cause systemically toxic and stigmatizing beliefs.

Mapillar Dhan is personally inspired to fight for those affected by sickle cell because she is the mother of three (3) beautiful daughters who all battle Sickle Cell Disease. She knows firsthand what people don’t know about living with this challenging disease and caring for children who struggle with its symptoms daily.  She is compelled to speak out loud and share a few points to keep in mind when engaging with SCD patients. She believes; the more you know, the more you can crush the barriers to care so patients can be assured they will receive the timely and appropriate treatment that they deserve. 

Here are some of her ‘Tips”:

  • RESPECT THE EXPERTISE OF THE PATIENT:  More needs to be done to build communication, sensitivity and awareness with SCD patients. Patients are experts in their own disease. SCD patients are not seen as partners in their own care. If a patient says, “This drug doesn’t work for me, but that one does,” what the doctor hears is, “This person has a drug of choice”. What is true is the SCD patient has lived with their disease since birth and knows what works for them.
  • SICK PEOPLE DO NOT ALWAYS LOOK SICK:  Please do not tell a SCD patient that he or she does not look sick. It is incredibly offensive and very hurtful. This is a community that has real issues with being taken seriously, especially in the hospital setting. SCD patients all around this country are being made to feel like they are faking their pain by medical professionals. They are being told that they are drug seekers simply because you can’t see their pain. SCD impacts every aspect of a person’s life and is extremely debilitating. Even when you do not see the severity of their illness; that does not mean that they are not experiencing a great deal of pain or feel very sick.
  • IT’S OK TO SAY YOU DON’T KNOW:  I wish more medical professionals would say that they do not know about how to treat SCD patients instead of minimizing their pain, rushing their care, and prematurely sending them home, only for them to return to the hospital oftentimes in an even much critical condition than before. When it comes to treating SCD complications, time does matter
  • THE DISEASE AFFECTS EVERYONE DIFFERENTLY:  
    My daughters are three sisters with the same mother and father all battling the same disease. They all have different symptoms and different experiences.

My oldest daughter, Tully, who is now 17, started to have severe bouts of pain, known as pain crises, when she was 6 months old. Until a year ago, she was having two to three crises a year, which means she was hospitalized for at least a week. About a year ago, after a blood transfusion, she developed antibodies to the blood group antigen, Jsb, which means she can only get transfusions from the 1-2% of donors who lack this antigen.
My other daughters have not had pain crises, but my middle daughter, Khadeejah, who is 15, had a stroke when she was 7 years old. Since then, she’s had monthly blood transfusions and 10 surgeries, including a major brain surgery.
My youngest daughter, Hajar, who is 11, struggles with the disease in her own way. She doesn’t have obvious symptoms or require regular blood transfusions, but she has cognitive challenges that are the result of “silent” mini-strokes associated with SCD.

“We have to look at individual patients and treat the disease more broadly. As a community, we know that not much is taught about sickle cell disease in medical and nursing schools. Until we can work to change that, a healthy dose of vulnerability, understanding, compassion, care, and empathy needs to be prescribed when treating people with SCD.”

To learn more about MTS Sickle Cell Foundation click  here.

Mapillar Dahn headshot
Mapillar Dahn
Founder & CEO,
MTS Sickle Cell Foundation
Dorothy Leone Glasser headshot
Dorothy Leon Glasser
Executive Director, Advocates for Responsible Care
Co-Chair, Georgia Bio Patient Advocacy Alliance

Georgia's Political Landscape Has Changed. Our Mission Hasn't.

November 4, 2026
CEO Note: A New Political Landscape, A Continued Commitment to Georgia Life Sciences Georgia's 2026 election results mark a historic shift in the state's political landscape, setting the stage for a new administration, new statewide leadership, and a potentially changed balance of power in the General Assembly as we approach the 2027 legislative session. At the national level, Democrats won control of both chambers of Congress , creating a new dynamic for federal policymaking. With the presidency remaining under Republican leadership, the coming years will require bipartisan cooperation to advance legislation. Changes in congressional leadership and committee oversight could significantly affect healthcare, federal research funding, FDA policy, drug pricing, and patient access. The most significant changes for our industry, however, are happening here in Georgia. Keisha Lance Bottoms' victory in the gubernatorial race marks a historic transition in state leadership, ending more than two decades of Republican control of the Governor's Office. She will also become the first Black woman elected governor in U.S. history. Democrats also swept Georgia's statewide executive offices , including lieutenant governor, attorney general, secretary of state, and the commissioners responsible for agriculture, labor, and insurance. These leadership changes create new opportunities for engagement on the policies and investments that shape Georgia's economy. In the General Assembly, Democrats made substantial gains and appear positioned to take control of the Georgia House of Representatives , pending final results in several close races. Republicans retained a narrowed majority in the State Senate. This potentially divided legislative environment will require thoughtful engagement and collaboration across party lines. We can also expect considerable turnover in the General Assembly, with dozens of new legislators beginning their terms in January. Along with a new Governor and incoming administration, this creates an important opportunity to introduce policymakers to Georgia's life sciences industry, its economic contributions, and its potential for future growth. What Does This Mean for Georgia's Life Sciences Industry? Life sciences is an economic development priority that should transcend party lines. Our industry's growth depends on a combination of sound public policy, private investment, research, workforce development, infrastructure, and a business environment that encourages innovation and commercialization. As Georgia establishes its new leadership priorities, several areas will be particularly important: Economic Development and Manufacturing: Positioning Georgia to attract and retain biopharmaceutical, biotechnology, and MedTech companies while advancing the infrastructure and capabilities needed to support scale-up manufacturing. Research and Commercialization: Strengthening connections between Georgia's research institutions, emerging companies, investors, and industry partners to move discoveries from the laboratory into commercial applications. Workforce Development: Expanding investment in technical education, apprenticeships, and industry-aligned training to prepare Georgians for the growing range of life sciences careers. Capital and Investment: Improving access to capital and supporting programs that help Georgia-based companies grow, commercialize technologies, and remain competitive. Healthcare Innovation and Patient Access: Supporting an environment that encourages medical innovation, advances research, and improves patient access to new treatments and technologies. These priorities align directly with Pathways & Partnerships: A Roadmap for Georgia's Life Sciences Sector , our ten-year strategy to position Georgia as a leading scale-up manufacturing hub in the Southeast. Georgia enters this transition with both an opportunity and a clear need to strengthen its competitiveness in life sciences. The recently released BIO/TEConomy report highlights the industry's significant contributions, including more than 42,600 jobs across over 4,200 establishments, while reinforcing the opportunity for Georgia to accelerate growth relative to other states. Our Roadmap provides a foundation for working with policymakers to turn these opportunities into sustained investment, stronger industry partnerships, and high-quality jobs throughout Georgia. GLS's Role Moving Forward For Georgia Life Sciences, this transition reinforces the importance of our role as the industry's statewide voice and convener. We will be intentional about building relationships with the incoming administration, new legislative leadership, returning legislators, and state agencies. We must ensure that policymakers understand not only the healthcare implications of our industry, but also its broader economic impact: high-quality jobs, significant research investment, advanced manufacturing, innovation, and opportunities for communities across Georgia. At the federal level, we will continue working with our national partners and Georgia's congressional delegation to advocate for policies that sustain research and innovation, support a predictable regulatory environment, strengthen American biomanufacturing, and advance patient access. With a new administration and many new legislators, we have an opportunity to establish a stronger understanding of what it takes to build and sustain a competitive life sciences ecosystem. That means bringing industry leaders to the table, communicating our priorities, identifying areas of bipartisan alignment, and advocating for policies that support long-term growth. Our industry's success requires a long-term commitment that extends beyond any election cycle or administration. The political landscape may change, but our commitment to advancing Georgia's life sciences industry remains constant. We look forward to working with leaders on both sides of the aisle to ensure Georgia continues to be a place where life sciences companies can innovate, invest, manufacture, and grow.

Why PDUFA Reauthorization Matters for Georgia’s Patients and Economy

October 30, 2026
For Georgians living with serious and rare diseases, how quickly and predictably a new treatment moves through U.S. Food and Drug Administration (FDA) review can make a real difference. That predictability also matters to the researchers and businesses that make up Georgia’s growing life sciences sector. Both depend in large part on the Prescription Drug User Fee Act (PDUFA), a longstanding bipartisan program that Congress needs to reauthorize by 2027. How PDUFA Works Since 1992, PDUFA has allowed the FDA to collect user fees from biopharmaceutical companies to supplement the agency’s resources for reviewing new medicines. In exchange, the FDA commits to clear, predictable review timelines. The agency’s standards for safety and efficacy remain unchanged. By providing additional resources and establishing clear performance goals, PDUFA helps ensure patients can access new treatments in a more timely and predictable manner. The result of PDUFA have been significant. Before PDUFA, FDA reviews often took more than two years. Today, the median review time is 10 months for standard applications and 8 months for priority applications. In 2025, nearly 70% of new medicines were approved in the U.S. before any other country. What’s at Stake in 2027 Congress reauthorizes PDUFA every five years. The current agreement, PDUFA VII, expires September 30, 2027. Timely reauthorization is critical to maintaining the FDA’s review capacity, preserving regulatory predictability, and ensuring patients continue to benefit from medical innovation. Georgia stakeholders recently came together to talk through what that means here at home. On October 28, Georgia Life Sciences, the MTS Sickle Cell Foundation, and Georgia First hosted “PDUFA: How Medicines Reach People,” a lunch-and-learn at Brookhaven City Centre. Patient advocates, congressional staff, and business and academic leaders heard from Nick Magallanes of Todd Strategy Group, Natalie Crawford of Georgia First, Maria Thacker-Goethe of Georgia Life Sciences, and Mapillar Dahn of the MTS Sickle Cell Foundation. What We Heard At the event, speakers came at PDUFA from different angles, but the common thread was how the program affects Georgians. Mapillar Dahn of the MTS Sickle Cell Foundation stressed that patients need to remain at the center of conversations. As a mother of three daughters with Sickle Cell Disease, Mapillar stressed that she wants the FDA to have what it needs to carry out a thorough review without unnecessary delays. The confidence families place in a treatment depends in part on confidence in that process. Natalie Crawford with Georgia First and Mended Hearts spoke about the need for a fully resourced FDA so that Georgia patients have access to innovative treatments and also for a healthy Georgia economy. Additionally, Maria Thacker-Goethe spoke to what PDUFA reauthorization means for Georgia’s booming life sciences sector. She warned that without PDUFA reauthorization, research across the board will be stifled – ranging from devastating impacts to small startups to significant delays in investments and research. Part of a National Conversation As Congress prepares for the 2027 reauthorization, conversations like these help bring together patients, advocates, and community leaders to highlight the real-world importance of the program. Decisions made in this reauthorization cycle will shape FDA resources and review timelines nationwide. By reauthorizing PDUFA on time, Congress can make sure the FDA can keep reviewing new medicines efficiently and patients in Georgia and across the country can get the treatments they need. 

Importance of Life Sciences M&A Amid Rising Interest Rates

October 29, 2026
Increasingly high bond rates are having important implications for the U.S. life sciences ecosystem – and underscore the role of mergers and acquisitions (M&A) and other pro-competitive partnerships in advancing innovation. The upshot. Developing a new medicine requires significant and sustained investment over many years. This makes the life sciences industry especially sensitive to changes in the cost and availability of capital. With financial conditions tightening, a predictable environment for life sciences M&A is critical to sustaining investment in the next generation of cutting-edge treatments and cures. Why bond rates matter. It can cost billions and take more than a decade to bring a new treatment or cure to patients. Often, these companies operate without a profit and rely on outside investment (such as venture capital) to finance this high-stakes journey. When relatively low-risk investments like U.S. Treasury bonds offer stronger returns, investors need significantly greater potential returns to justify betting on riskier, long-term investments, such as drug development. The cost to early-stage life sciences investment. For emerging life sciences companies, less available capital can mean fewer resources to advance promising science and fewer new cures reaching patients. Research from NBER estimated that an unexpected one-percentage-point increase in interest rates reduces R&D spending across industries by approximately 1–3% and venture investment by roughly 25% over the following one to three years. M&A as an investment incentive. A healthy M&A environment provides a critical incentive for investors to support high-risk science by offering a potential exit. The prospect of an acquisition allows investors to realize returns from financing early-stage research – and reinvest that capital in the next generation of treatments and cures. M&A helps advance promising innovation. M&A is similarly vital to turning the promising science that attracted investment into approved medicines for patients. Emerging companies contribute specialized scientific knowledge and innovative drug candidates – but often depend on partnerships with larger, more established companies to access the clinical-development expertise, regulatory capabilities and infrastructure needed to bring medicines to patients. The evidence reinforces this complementary relationship. Findings from Cornerstone Research show that drug projects acquired from smaller companies by firms with prior launch experience were three times more likely to launch – and five times more likely to launch as novel drugs – than projects acquired by another small firm. A predictable pathway forward. When higher bond rates raise the bar for investing in innovation, policymakers should avoid adding unnecessary barriers to an already challenging investment environment. A predictable and balanced approach to merger enforcement can help preserve life sciences M&A as a vital pathway for transforming promising scientific discoveries into new medicines for patients. Source: Importance of Life Sciences M&A Amid Rising Interest Rates - Partnership for the U.S. Life Science Ecosystem (PULSE)
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