IfPA summits gather health policy stakeholders to debate, share, listen, learn and coalesce on the access issues that matter.

Value of Innovation Policy Forum

On April 28, 2022, the Institute for Patient Access for a policy forum on the value of innovation.

The event featured Keynote Speaker David Heath, author of Longshot: The Inside Story of the Race for a COVID-19 Vaccine.

Discussion topics included:

  • Developing medical breakthroughs in Alzheimer’s disease
  • COVID-19 vaccine development
  • Policies that encourage innovation

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National Policy & Advocacy Summit on Biologics

The sixth annual National Policy & Advocacy Summit on Biologics brought together health
care providers, policy experts, patient advocates and other stakeholders. The event explored
how sound public policies can facilitate the expanded use of biologics in patient-centered
care. This year’s event, held virtually, examined issues such as:

  • Innovation and rare disease
  • Current federal and state policy considerations
  • The role of biosimilars in expanding treatment options
  • Insulin affordability and interchangeable biosimilars

Click below to read the report.


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Getting Telehealth Policy Right

Capping a year and a half of explosive growth in telehealth, “Getting Telehealth Policy Right” allowed experts, advocates, patients and providers to explore timely questions of policy, access and balance.

Speakers and panelists discussed issues such as:

  • The use of telehealth for preventive care
  • Balancing virtual and in-person physician visits
  • How telehealth can reduce health care disparities
  • The benefits and drawbacks of on-demand telehealth apps
  • How state and federal policy will shape telehealth moving forward

Click below to read the summit report.


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Infant Health Policy Summit

The sixth annual Infant Health Policy Summit welcomed health care providers, parents, policymakers, advocates and other stakeholders to explore how policy solutions can improve the health and lives of infants and their families.

This year’s event, held virtually, examined issues such as:

  • The value of safety and innovation for neonates
  • Respiratory syncytial virus and compounding disparities
  • Perspectives from the Asian, Black, Hispanic and LGBTQ communities
  • The long-term effects of separating mothers and babies during COVID-19
  • Nutrition and safety in a growing human donor milk market
  • Newborns and rare diseases

Click below to read the report.


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Cardiovascular Health Policy Summit

The fourth annual Cardiovascular Health Policy Summit welcomed health care providers, policymakers, advocates and other stakeholders to explore how policy solutions can improve the health and lives of Americans living with cardiovascular disease.

This year’s event, held virtually, examined issues such as:

  • Non-medical switching
  • Updating and implementing medical guidelines
  • Medicare part D reform
  • Disparities with peripheral artery disease.

Click below to read the report.


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Seventh Annual Summit on Balanced Pain Management

What if all patients had a pain management approach that allowed them to live full and productive lives? That pivotal question resonated throughout the seventh Summit on Balanced Pain Management, a national policy event exploring patient-centered care for people living with pain.

Led by Mike Walsh of Alliance for Balanced Pain Management and Amanda Conschafter of the Alliance for Patient Access, the summit welcomed health care providers, policy experts, patient advocates and other stakeholders.

This year’s event, held virtually on February 2, 2021, examined:

  • Policy predictions for a new presidential administration
  • COVID-19’s impact on pain management
  • Utilization management barriers
  • Treatment challenges and osteoarthritis
  • Chronic pain and mental health.

Click below to read the report.


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National Policy & Advocacy Summit on Biologics

The fifth annual National Policy & Advocacy Summit on Biologics brought together health care providers, policy experts, patient advocates and other stakeholders. The event explored how sound public policies can facilitate the safe use of biologics in patient-centered care.

This year’s event, held virtually, examined issues such as:

  • What the 2020 election means for health care policy
  • Biologics’ role in treating cancer and migraine disease
  • The lasting impact of COVID-19 health policy flexibilities
  • Mental health and chronic disease
  • Biosimilars’ market uptake

Click below to read the report.


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Sixth Annual Infant Health Policy Summit

The sixth annual Infant Health Policy Summit welcomed health care providers, parents, policymakers, advocates and other stakeholders to explore how policy solutions can improve the health and lives of infants and their families. This year’s event, held virtually, examined issues such as:

  • Late preterm infants
  • Respiratory syncytial virus and COVID-19
  • Isolation and disruption during COVID-19
  • Vaccines
  • Disparities in infant health
  • Congenital gut disorders
  • Human milk.

The summit, which included a series of panel discussions, individual stories and interviews, was convened by the National Coalition for Infant Health and co-hosted by the Institute for Patient Access and Alliance for Patient Access. Read the report and watch the summit recording to learn more.

Click below to read the report.


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Sixth Annual Summit on Balanced Pain Management

Pain is a single word with a thousand different meanings, as the sixth annual Summit on Balanced Pain Management made clear.  So if policymakers want to tackle America’s pain problem, they should begin by embracing individualized, patient-centered, care.

What does that look like?  Panelists and speakers at the day-long policy event in Washington, DC weighed in. 

Profiles in Pain

For patients, it may begin with having their pain understood by family, society – and even their physicians.  Through a series of “Profiles in Pain,” patients attested to how pain has shaped their lives. Shirley Kessel of Miles for Migraine described the intergenerational impact of migraine pain on her family.  Kessel recalled her mother withdrawing from the family for days with migraine attacks, which now prevent her two daughters from fulfilling their academic and professional potential.  

For Penny Cowan of the American Chronic Pain Foundation, debilitating pain became manageable only after receiving interdisciplinary care at an inpatient facility.  Cowan has since spent her life teaching others how to live with pain.

Pain also shaped the lives and careers of Dania Palanker, JD, of Georgetown Health Policy Institute and Kate Nicholson, JD, a civil rights attorney.  Nicholson was an attorney enforcing the Americans with Disabilities Act when a surgical injury initiated intense back pain.  She was forced to reconfigure her work through video conferencing and telecommuting.  

Palanker, meanwhile, fought fibromyalgia pain throughout law school.  She now dedicates her career to making insurance affordable and accessible to Americans from all walks of life.  When it comes to coverage for alternative pain care and integrative techniques, “we have a long way to go,” Palanker emphasized.

Access & Innovation in Pain Care

Panel discussions reinforced Palanker’s concern.   

Members of the Department of Health and Human Services’ Pain Management Best Practices Interagency Task Force have issued a “tour de force” report on policy solutions to America’s dual opioid and pain management crises, explained John Prunskis, MD, of the Illinois Pain Institute.  Cindy Steinberg of the U.S. Pain Foundation conveyed the report’s conclusion that “Best practice is a multimodal, multidisciplinary approach” with both pharmacologic and non-pharmacologic treatments.  But as Jianguo Cheng, MD, PhD, of the Cleveland Clinic explained, “If [multidisciplinary care is] not accessible, it’s meaningless.”

Continued innovation is also critical to making patient-centered pain care a reality.  In a panel discussion hosted by Peter Pitts of the Center for Medicine in the Public Interest, the Food and Drug Administration’s Douglas Throckmorton, MD, explained how the agency is working to tackle the challenges presented by pain care.  Leigh Callahan, PhD, of the Osteoarthritis Action Alliance emphasized the importance of clinical trials that gauge outcomes that matter to patients.  Patients want to be able to “pick up their grandchild, play golf,” Callahan explained.  

And Danielle Friend, PhD, of the trade group Biotechnology Innovation Organization noted that insurance coverage challenges can discourage innovation in new, opioid-alternative pain treatments.  “It’s hard to get investment,” Friend noted, “if people think they won’t be reimbursed.”

Coverage challenges also arose during a panel discussion on access to patient-centered care.  Matt Salo of the National Association of State Medicaid Directors noted that “there’s always a lag” between new approaches like integrative pain care and uptake.  Salo emphasized the need for more data demonstrating that integrative and multimodal pain approaches work for patients.  Ellen Blackwell, MSW, of the Centers for Medicare and Medicaid Services agreed, though she noted that some states have begun to “put their toes in the water” by providing coverage for alternative or non-pharmacologic treatments.

Ann Quinlan Colwell, PhD, RN, of the American Society for Pain Management Nursing emphasized the importance of a patient-centered approach, explaining that “each person feels pain differently and has a different ability to utilize different interventions and medications.”

Diverse Needs & Treatment Options 

Addressing the different facets of pain often requires a multi-prong approach.  In a panel discussion of integrative pain care, Mark Shepherd, PT, of Bellin College outlined the value of physical therapy.  “We should empower our patients, we should educate them, and we should teach them to move in a way that’s comfortable,” Shepherd explained.  Fellow panelist Greg Hobelmann, MD, of the Ashley Addiction Center noted the importance of emotional support and treatment for co-occurring psychological issues.   And moderator Paul Christo, MD, of Sirius XM Radio’s “Aches and Gains” highlighted the power of neuromodulation for treating pain.  Michael Leong, MD, of Stanford’s Pain Management Center agreed the technology could be “amazing,” especially for patients seeking non-opioid treatment options.

Meanwhile, a panel discussion of 2019 survey data underscored why patient-centered care is needed.  Monica Mallampalli, PhD, of HealthyWomen reported that the organization’s study revealed a majority of women saying pain stopped them from living a full and active life.  Brian Green of Health Union conveyed a key finding from a new study undertaken by Health Union and the U.S. Pain Foundation: patients in pain want a health care provider who uses a personalized, individualized approach and is willing to try alternative treatments.  The patients’ primary goal, Green explained, is to maintain quality of life, keeping pain at manageable levels so people can go about their daily lives.

Josie Cooper of the Alliance for Gout Awareness conveyed study findings on how stigma and misinformation complicate treatment for gout, a painful form of arthritis.  “Patients are self-treating and trying to do this on their own,” Cooper explained, “without consultation with a medical professional.” 

The day-long event made it clear that education and access to patient-centered pain care are challenges that require committed advocacy from patients and health care providers.  In closing remarks, Alliance for Patient Access National Chairman David Charles, MD, urged attendees to come together in the new year to advocate for policies that advance the approach.

The sixth annual Summit on Balanced Pain Management was convened by the Institute for Patient Access and hosted by the Alliance for Patient Access and the Alliance for Balanced Pain Management.  See highlights and videos from the day’s event using #SummitBPM2019.

Read the event report.

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Infant Summit 2019

As CNN anchor Alisyn Camerota remembers, it was just another day at work. Until it wasn’t.  A routine prenatal check-up for Alisyn, then 30 weeks pregnant with twins, turned life changing when her doctor announced that she’d need to deliver her daughters within 48 hours. A rare condition was preventing one baby from receiving enough nutrition through the umbilical cord.  

As Camerota explained during her keynote address at the fifth annual Infant Health Policy Summit, this was just one of the challenges she faced.  Before her pregnancy, Camerota had struggled with infertility. After her daughters were both safely delivered and in the NICU, she faced breastfeeding challenges.   

Camerota described attempting to pump breastmilk for days with no results.  When she told her doctor she was ready to give up, he advised, “Give it one more day.”  The next day, Camerota recalled, she produced her first drops of milk. The NICU nurses – “angels on Earth” – immediately put it into her newborn daughter’s feeding tube.  

Camerota’s experiences resonated with the advocates, clinicians, patients and policymakers attending the summit.  And the day’s lineup of interviews and panel discussions echoed themes from her story, especially the struggles and the triumphs of meeting infants’ needs. 

Breastfeeding & Human Milk

Describing the value of human milk as a “cornerstone issue” for the National Coalition for Infant Health, Medical Director Mitchell Goldstein, MD, moderated a discussion of how human milk benefits the human microbiome.  Human milk doesn’t just promote “good” gut bacteria but can reduce the risk in lower respiratory infections by 50%, explained Cynethia Bethel-Jaiteh, DNP, of the University of Louisville School of Nursing, and lower the risk of GI infections by 59%.  It can also reduce the risk of necrotizing enterocolitis, explained Victoria Niklas, MD, of Prolacta Bioscience.

Deb Discenza of PreemieWorld recalled her own challenges pumping breastmilk for her premature daughter, born at 30 weeks gestation, while the hospital intended to give her daughter formula. 

Vaccine Hesitancy

Incongruity between parents’ and health care providers’ intentions also came up during a panel discussion of preventable diseases and vaccine hesitancy in the United States.  Daniel Salmon, PhD, of Johns Hopkins School of Medicine and Mary Koslap-Petraco, DNP, of Stony Brook University School of Nursing debunked widespread myths that have led to a rise in vaccine exemptions – and fueled outbreaks of preventable diseases.  Topics included autism links, government overreach and misinformation about vaccine ingredients.  

Both Salmon and Koslap-Petraco emphasized the importance of empathizing with parents and educating about the potential impact of vaccine-preventable diseases like measles, rubella and hepatitis B.

NICU Disparities 

Good communication with parents of young children was also a central theme in a panel discussion about how to build patient-centered NICUs.  DeShay Rice-Clansy, MSW, of Atlanta’s Grady Health System and Brigit M. Carter, PhD, RN, of Duke University School of Nursing described how the different demographics being served by NICUs can present strikingly different needs.  One mother delivering her baby at Grady Hospital, Rice-Clansy recalled, had only a second-grade education.  Other families faced challenges as stark as homelessness, mental health issues, substance abuse and sex trafficking.  

These hospitals and their NICUs must meet families where they are, explained Suzanne Staebler, DNP, of Emory University.  That includes staffing the hospital with diverse health care providers. But that’s not always easy. As Bridget Carter, PhD, of Duke University School of Nursing explained, the rate of diverse providers is “phenomenally low.”  

Innovation for Neonates

Getting infants and their families what they need also requires effective public policies.  In an interview with Amy Akers of the National Perinatal Association, the FDA’s Susan McCune, MD, described the strides that research and regulatory policy have made for neonates.  She noted that safety efforts have come a long way, describing morphine-laced “syrup” promoted in the early 1900s for babies with colic or teething pains.  Legislative policies are increasingly designed to promote the development of drugs specifically tested and designed for infants, Dr. McCune explained. She noted the impact of bills like the “Best Pharmaceuticals for Children Act” in 2002, which incentivizes the development of drugs for infants.  

But the process is rife with challenges. Only about 40% of studies of pediatric drugs are successful, McCune noted.  She emphasized the role of partnership, encouraging nonprofits and other stakeholders to join alongside regulators and researchers to improve options for treating infants.    

Respiratory Care

Respiratory care is one area where continued policy progress is needed.  In a conversation with Ashley Darcy Mahoney, PhD, of The George Washington University School of Nursing, Donald Null, MD, of UC Davis Children’s Hospital, described the improvement he’s seen during the course of his career.  It can take “a long time” for advances to make their way through, Null noted, and even then, policy often lags behind.  

Erin Thatcher of PPROM Foundation knows that all too well.  The mother of fraternal twins born prematurely, Thatcher described the impact of respiratory syncytial virus on her daughter, now 7, who still battles asthma-like symptoms from the disease.  The effects of RSV “can last for years,” Dr. Null explained.     

The panel spoke to the Academy of American Pediatrics Committee on Infectious Disease guidelines from 2014 that effectively reduced the number of infants who receive RSV prophylaxis.  Of those guidelines, Thatcher noted, “I wish they’d look at long-term outcome…the policies are not taking into account what’s happening to families.” 

Tubing Safety & Maternal Nutrition

Infant health, safety and guidance also came to light in updates provided by National Coalition for Infant Health Executive Director Susan Hepworth.  On the topic of tubing and connector systems used in NICUs, Hepworth alluded to hospitals’ being pressured to incorporate a tubing connector system known as ENFit, which can present safety challenges for infants.  Hepworth emphasized the importance of thoughtful consideration by hospital systems and NICUs, which should make decisions based on what’s best for their patients.

Hepworth also addressed new guidelines on pregnant mothers and fish consumption.  Recently revised FDA advice could, Hepworth noted, “help pregnant women confidently add more seafood to their diet, with the goal to have pregnant women eat, on average, as much as 6 times more seafood than they currently do.” 

See footage of the event from Facebook Live and explore photos and online activity from the day using #InfantSummit19.

Read the Report

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