A Patients Perspective of Clinical Trial Benefits

Dorothy Leone-Glasser, RN, HHC, CEO Advocates for Responsible Care,

Chair Ga Bio Patient Advocacy Alliance

Clinical trials are essential for the development of new treatments for chronic illness patients. Every new medicine and treatment started with volunteers participating in clinical trials. Our current high standards of medical care and newly discovered therapies have improved the lives of so many patients with chronic, incurable illness. In addition to testing new drugs and devices, clinical trials provide a scientific basis for advising and treating patients.

Being diagnosed with an incurable disease at 19 years, I have always participated in clinical trials. Yes, the larger view of clinical trials research is designed to yield scientific knowledge for future patients that improves their health outcome. For me, the decision to take part in trials was a necessity to stay alive. Having serious complications to my Systemic Lupus, medicine was still in the dark as to effective treatment to stop the progression of the disease.  I was involved in clinical trials from Plasmapheresis, nutrition and lifestyle changes to drugs used for other diseases.  When I was an adult, needing to obtain my own medical insurance, prior to the ACA, I was unable to get insured because of my poor risk rating due to heart attack, stroke, kidney failure and seizures; all related to my disease. With my next diagnosis of cancer at age 30 then another cancer diagnosis five years later, I was once again looking for clinical trials. I was fortunate to know caring physician colleagues who assisted me in my quest. Physicians play a key role in referrals to clinical trials. Being well-prepared to answer common questions will help clinicians guide their patients and family members through the decision process.

I did my research to understand the risks and benefits of each trial, knowing that rules are in place to protect human research subjects and all studies involving humans are reviewed locally to ensure that subjects are treated safely, fairly, and confidentially. Nevertheless, each patient should consider for themselves whether participation in a trial is safe for them and consistent with their values. Every patient must be comfortable to ask the research team any questions they have and to voice their concerns throughout the trial period. Patients must understand that there are risks in clinical trials, such as possible side effects resulting from the treatment and they should be aware that the treatment may not be effective for the participant. Participating in a trial also takes a greater commitment of your time and attention than standard treatment.

The accepted view had been, patients should not misunderstand clinical trials as a substitute for medical care. However, without insurance, I saw the clinical trial as a way to obtain expert medical care at a leading health care institution. The rigorous oversight during the trials helped to empower me to be my best healthcare advocate, keep me on track with my self-care and opened the door to other resources that enabled me to continue my education and career goals even while wheelchair bound.

Clinical trials provide research that helps patients be full participants in their illness, regardless of the trial outcome. Well-designed and executed clinical trials provide an opportunity for participants to:

  • Play an active role in their own health care
  • Empower patients to be their best healthcare advocate
  • Gain access to new research treatments before they are widely available
  • Increase the options for treatment when standard therapy has failed
  • Obtain expert medical care at leading health care facilities during the trial
  • Expand research and methods of care to underserved and minority communities while balancing health equity
  • Help others by contributing to the advancement of medical knowledge

Participating in clinical trials throughout my illness journey has extended my life, empowering me to have a successful career as a Nurse Specialist, Chronic Illness Counselor and Health Advocacy organizer. They provided an opportunity to understand the complexities of my diseases, to have my voice heard as an involved patient, to ease the stress for my concerned caregivers and to play a role in helping other patients sharing the same illness struggles.

Clinical trials are essential for the development of new treatments. Whether or not to participate in a clinical trial is a personal decision. Each patient and each clinical trial is different. When considering a clinical trial, you must commit to being an active participant; gathering as much information as possible, coordinating with your physician and medical team and then doing what you feel is best for you. Those who decide to volunteer may be contributing directly to our understanding of diseases and how to treat them.

Panelists

Michelle Kimberly Clark headshot

Michelle Kimberly Clark

Breast Cancer Survivor, Clinical Trials Patient Participant

In May of 2013, while exercising Michelle felt a small mass on her left breast. In 2015, she met Andre (her husband), starting her life as a young, vibrant, African American woman. They moved to Atlanta and as Michelle states, she was “on her way to living every girl’s dream of love, marriage, and then the baby in the baby carriage!” While showering she noticed that after two years the lump was still in her breast. She scheduled her annual physical, and unfortunately was told by her doctor not to worry about the lump; “You’re too young,” the doctor exclaimed! 

In 2019 Michelle sought a second opinion by a new doctor who scheduled her for a mammogram and ultrasound. The COVID-19 pandemic hit and stalled her appointment for what has already been a long and unsettling process. In August 31, 2021, after completing a mammogram and ultrasound., at just 36 years old, Michelle was diagnosed with breast cancer in her left breast with a suspicious area on her right breast.

Michelle made the difficult decision to have double mastectomy surgery. On November 2, 2021, she froze seven (7) embryos and on January 2022 she entered a clinical trial, completing four rounds of intense chemotherapy. A component of her trial included the research team tracking neuropathy in African American women under treatment using the drug Taxane (docetaxel).

Michelle admits she was hesitant to participate in the clinical trial at first, because of the uncertainty and having a bit of selfishness for her own health. However, after voicing her concerns to her doctor and an amazing research nurse, she felt comfortable with being a part of a clinical trial that would allow her to discuss the effects of the treatment.  Oftentimes, patients dealing with serious illness hear the words “clinical trial” and they feel reluctant to move forward. Michelle felt reassured this trial allowed her to feel confident in knowing that her experience would benefit more black women undergoing treatment for breast cancer in the future. From her participation in this trial, her research nurse, later became a part of her support group.  Michelle believes that clinical trials are important because they allow medications and treatments to be effectively targeted for African American women.

Dr. Del Smith headshot

Dr. Del Smith

CEO, Acclinate

Dr. Del Smith is passionate about using business principles to address health inequities that have long plagued communities of color. He is the co-founder and CEO of Acclinate, a growing digital health company on a mission to improve health equity through inclusive research. Del’s career spans healthcare, IT, government, and higher education. He earned his Ph.D. In Management from the University of Alabama and spent seven years as an HBCU business school dean prior to co-founding Acclinate.   

Jessica Williams headshot

Jessica Williams, MD, MPH

Assistant Professor of Medicine; Division of Rheumatology; Emory University School of Medicine; Director, Lupus Patient Navigator Program Grady Lupus Clinic

Jessica Williams, M.D, M.P.H is an Assistant Professor of Medicine in the Division of Rheumatology at Emory University School of Medicine. Dr. Williams is a graduate of Emory University School of Medicine (MD, 2015), Emory University Rollins School of Public Health (MPH in Epidemiology, 2015), Harvard/Brigham and Women’s Hospital Internal Medicine Residency (2018), and Harvard/Brigham and Women’s Hospital Rheumatology Fellowship (2021). She is passionate about clinical research to advance care for patients living with lupus, with a focus on diverse and underserved patient populations. Her research to date has resulted in twenty-four publications and two oral presentations at the American College of Rheumatology annual meetings. Her recent first-author publications have focused on increasing diversity in lupus clinical trials, racial disparities in contraception care among reproductive age-women with lupus, and use of an integrated care management program to uncover social determinants of health needs among patients with lupus. Dr. Williams is also a practicing rheumatologist at Grady Memorial Hospital in Atlanta, Georgia, where she supervises Emory rheumatology fellows in both the clinic and inpatient consult setting.

Dr. Williams was recently awarded a grant from the Bristol Myers Squibb Foundation Diversity in Clinical Trials Career Development Program to study clinical trial perceptions and barriers among a large, population-based, predominantly Black cohort of patients with lupus and to implement the Phase III REGENCY clinical trial for lupus nephritis in a predominantly Black, safety-net clinic setting. She has also received research awards from the Rheumatology Research Foundation and the American Society of Hematology, as well as a Health Equity Innovation Program research grant from the Brigham and Women’s Hospital Department of Medicine to implement a nurse-led pilot clinical trial to reduce acute care utilization and improve preventive care among high-risk patients with lupus. Her other current projects include implementation of a lupus patient navigator program in the Grady Lupus Clinic, development of a lupus cohort in rural Georgia, exploring risk factors for suicidality among patients with lupus, and exploring social determinant of health risk factors for recurrent acute care use among patients with lupus.

Georgia Life Sciences Urges Protection of Patient Access as Georgia Implements Medicaid Changes

September 14, 2026
Georgia Life Sciences has submitted comments to the Georgia Department of Community Health (DCH) regarding the Georgia Pathways to Coverage program and implementation of new federal Medicaid requirements. As Georgia prepares for these changes, Georgia Life Sciences is urging state leaders to prioritize continuity of care and minimize unnecessary administrative barriers that could delay or disrupt access to medically necessary treatment . This is particularly important for Georgians living with serious, chronic, rare, and medically complex conditions who may rely on ongoing medications, diagnostics, therapies, medical technologies, specialty care, and coordinated treatment plans. Even temporary disruptions in coverage can interrupt care and create additional challenges for patients and families. In its comments, Georgia Life Sciences encouraged DCH to protect continuity of coverage during eligibility and redetermination processes, provide patients and caregivers with clear and timely information, minimize unnecessary administrative burdens, and establish appropriate safeguards when a coverage disruption could interrupt an established course of treatment. “As Georgia implements these new federal requirements, we want to ensure that patients remain at the center of the process,” said Maria Thacker Goethe, MPH, President & CEO of Georgia Life Sciences. “Administrative changes should not become barriers between patients and the care they need. Protecting continuity of care is particularly important for Georgians managing serious and complex health conditions.” Read Georgia Life Sciences’ full comments to DCH here.

White House Fact Sheet: President Donald J. Trump Announces Deal with Nine Additional Pharmaceutical Manufacturers to Lower Drug Prices for Americans

August 31, 2026
The White House, August 31, 2026 - ADVANCING MOST-FAVORED-NATION (MFN) PRICING: Today, President Donald J. Trump announced nine new agreements with pharmaceutical manufacturers to lower prescription drug prices for Americans in line with the lowest prices paid by other developed nations (known as the most-favored-nation, or MFN, price). The agreements bring the total number of pharmaceutical manufacturers with MFN deals to 26, covering 89% of the branded drug market. The nine manufacturers are comprised of mid-sized pharmaceutical companies, including Alcon, Astellas Pharma, BeOne Medicines, BridgeBio, CSL, Kyowa Kirin, Sun Pharma, Teva Pharmaceuticals, and UCB. The agreements reduce prices on drugs that treat numerous costly, chronic, and even rare diseases, including hemophilia, Parkinson’s disease, macular degeneration, glaucoma, liver disease, skin conditions, and various forms of cancer. The agreements will provide every State Medicaid program in the country access to MFN drug prices on products made by the nine companies, resulting in billions of dollars in savings for Americans and continuing President Trump’s historic efforts to strengthen the program for the most vulnerable. The agreements ensure foreign nations can no longer use price controls to freeride on American innovation by guaranteeing MFN prices on all new innovative medicines the nine companies bring to market. Each of these manufacturers has agreed to fundamentally rebalance international drug pricing by providing MFN pricing to American patients. BOLSTERING AMERICA’S PHARMACEUTICAL SUPPLY CHAINS AND RESERVES: These nine pharmaceutical manufacturers committed to invest at least $19.6 billion collectively in U.S. manufacturing in the near term. Additionally, as part of the MFN agreements, several companies are donating active pharmaceutical ingredients for key products to the Strategic Active Pharmaceutical Ingredients Reserve (SAPIR) to reduce reliance on foreign nations and ensure the United States has an adequate supply of such products in the event of an emergency. UCB will contribute 163 tons of levetiracetam, an anticonvulsant used to control and prevent certain types of seizures, to the SAPIR. Sun Pharma will contribute 71.4 tons of clindamycin and 6.75 tons of doxycycline; both antibiotics to treat bacterial infections, to the SAPIR. Teva Pharmaceuticals will contribute 45 metric tons of metronidazole, an antibiotic and antiprotozoal used to treat certain bacterial and parasitic infections, and 4.8 tons of amlodipine, an antihypertensive drug, to the SAPIR. Astellas will contribute 25 kg of tacrolimus, an immunosuppressant used to prevent organ rejection in people who have had organ transplants, to the SAPIR. LOWERING COSTS FOR AMERICANS: President Trump’s decisive and historic actions are lowering drug prices for the American people. Since its February launch, patients have saved more than $700 million on medicines through TrumpRx, including massive discounts on some of the most popular and costly medications used to treat obesity and infertility. In July of 2026, senior citizens without access to GLP-1 coverage to treat obesity gained access for just $50 per month. In the two months since the launch of this program, over 500,000 seniors have saved a total of $216 million dollars on these life-changing medicines. The Council of Economic Advisers estimates the total savings from President Trump’s MFN deals to reach $600 billion over the next decade. DELIVERING ON PROMISES TO PUT AMERICAN PATIENTS FIRST: President Trump is delivering on promises for American patients, accomplishing historic wins that the political establishment did not believe were possible. On May 12, 2025, President Trump signed an Executive Order titled: “Delivering Most-Favored-Nation Prescription Drug Pricing to American Patients” directing the Administration to take numerous actions to bring American drug prices in line with those paid by similar nations. On July 31, 2025, President Trump sent letters to 17 of the leading pharmaceutical manufacturers outlining the steps they must take to bring down the prices of prescription drugs in the United States to match the lowest price offered in other developed nations. There are now MFN deals with each of those leading pharmaceutical manufacturers. On September 30, 2025, President Trump announced the first agreement, with the drug manufacturer Pfizer, to bring MFN prices to American patients. On December 1, 2025, the Office of the United States Trade Representative, the Department of Commerce, and the Department of Health and Human Services announced an agreement with the United Kingdom (U.K.) that will increase the net price of new prescription drugs by 25% in the U.K., helping ensure they pay their fair share for innovative medicines. On December 19, 2025, President Trump announced nine new agreements with major pharmaceutical companies. On February 5, 2026, President Trump launched TrumpRx.gov , where patients can access large discounts on many of the most popular and highest-priced medicines in the country, paying prices in line with the MFN price. As of today, August 31, the Administration now has agreements with Pfizer, Astra Zeneca, EMD Serono, Eli Lilly, Novo Nordisk, Amgen, Bristol Myers Squibb, Boehringer Ingelheim, Genentech, Gilead Sciences, GSK, Merck, Novartis, Sanofi, Johnson & Johnson, AbbVie, Regeneron, Alcon, Astellas Pharma, BeOne Medicines, BridgeBio, CSL, Kyowa Kirin, Sun Pharma, Teva Pharmaceuticals, and UCB. President Trump is calling on Congress to enact the Great Healthcare Plan , a comprehensive plan to lower drug prices, lower insurance premiums, hold big insurance companies accountable, and maximize price transparency. Source: Fact Sheet: President Donald J. Trump Announces Deal with Nine Additional Pharmaceutical Manufacturers to Lower Drug Prices for Americans – The White House

Boehringer Ingelheim Celebrates Grand Opening of New U.S. Animal Health Headquarters in Johns Creek, Georgia

August 31, 2026
NexGard® Plus donation to Johns Creek Police Department K-9 officers marks the company's commitment to the community. JOHNS CREEK, Ga. (August 31, 2026)– Boehringer Ingelheim today celebrated the grand opening of its new U.S. Animal Health headquarters in Johns Creek, Georgia, marking a significant milestone in the company's commitment to innovation, talent, and the future of animal health. Johns Creek was selected for its access to talent in one of the region's fastest-growing life sciences and innovation corridors, and proximity to other Boehringer sites in Georgia. The grand opening brought together elected officials, community leaders, customers, partners, and employees to celebrate Boehringer's presence in Georgia and its purpose of Transforming Lives for Generations through science and innovation. “The animals we care for and the customers we serve are at the center of everything we do,” said Peter Ploeger, U.S. Animal Health Country Managing Director, Boehringer Ingelheim . “This headquarters was designed to bring our people together, inspire collaboration, and strengthen our ability to develop solutions that improve the lives of companion animals, livestock, and the people who care for them. We are proud to call Johns Creek home and excited about the impact we will create together.” The Johns Creek headquarters complements Boehringer's broader Georgia footprint, which includes research, development, and manufacturing operations in Athens and manufacturing operations in Gainesville. Together, these sites, combining manufacturing, innovation and commercial activities, underline the importance of the U.S. for the company, which continues to invest in Georgia operations to deliver solutions that advance animal health around the world, according to event remarks from Dr. Armin Wiesler, Member of the Board of Managing Directors, Animal Health Business Unit . Georgia and local leaders, including Select Fulton Director of Economic Development Samir Abdullahi, highlighted Boehringer Ingelheim's continued investment in Georgia and commitment to the Johns Creek community. “Georgia continues to attract world-class companies because of our skilled workforce, business-friendly environment, and commitment to innovation,” said Georgia Gov. Brian P. Kemp . “Boehringer Ingelheim's investment in Johns Creek, along with their strong support of First Lady Marty Kemp's animal welfare efforts and K-9 law enforcement officers, reinforces their commitment to being a long-term partner with the State of Georgia." As part of the grand opening celebration, Alexandra McMenamy, U.S. Animal Health, Head of Pet at Boehringer , joined Chief Mitchell and local officials in presenting a donation of NexGard® Plus parasite protection to the Johns Creek Police Department's K-9 Unit in recognition of the department's service to the community. “We are proud to welcome a company committed to the well-being of animals,” said Mayor John Bradberry . “Boehringer Ingelheim’s support of the Johns Creek Police Department’s K-9 Unit is greatly appreciated.” The donation, made just after International Dog Day (August 26), highlights the company's commitment to supporting both animal health and the communities where its employees live and work. 
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