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

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

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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

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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

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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.

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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.

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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

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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.

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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.

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Second Annual Cardiovascular Health Policy Summit

Sandeep Jauhar’s grandfather was sitting down to lunch with family when he crumpled to the floor.  Jeff Kwitowski’s father was on a routine bike ride. Cat Davis Ahmed’s father was enjoying a game of tennis.  And Florence Champagne was in an office building when she dropped to her knees, gasping for air and praying for her life.

“The heart is the only organ that can kill you in a matter of minutes,” explained Dr. Jauhar, cardiologist, author and keynote speaker at the second annual Cardiovascular Health Policy Summit.  Speakers’ recollections of family tragedy and near-death experiences gave credence to his comment. They also attached a sense of urgency to the day-long event’s message: Heart patients need timely, affordable access to appropriate care and medicine.

In his opening remarks, former U.S. Surgeon General Kenneth Moritsugu, MD, emphasized this point.  “If we don’t have public policies that support and encourage access, we as health care professionals and advocates have failed our patients, and we will have failed our communities,” Dr. Moritsugu noted.  He implored the audience to “keep the patient at the center” of advocacy and health care.

But as the summit audience of health care providers, patients, Capitol Hill staff and other stakeholders came to understand, heart patients face a growing set of challenges.  

Rural Health Challenges

In a panel discussion titled, “Disparities in Rural America: Nurses’ View from the Front Lines,Martha Biddle, PhD, of the University of Kentucky College of Nursing explained that her typical patient faces multiple co-morbidities – “four-to-five active disease processes for most patients,” Biddle described.  

Rural isolation makes managing those conditions even harder.  Biddle described patients driving one-two hours to see a cardiology specialist.  And then there’s access to medicine itself. Eileen Handberg, PhD, of the University of Florida Health noted that some patients have 10 or more medications.  Even a modest co-pay, $5 or $10 per medicine, can become unmanageable for these patients given the number of drugs they take.  

Insurers’ prior authorizations can make access still more complicated.  Panel moderator Kim Newlin, MSN, of the Preventive Cardiovascular Nurses Association quipped, “I didn’t go to school and learn how to get prior authorization.” Eileen Handberg explained that the bureaucratic process is just another layer of complexity in patients’ attempt to access prescribed medicine.

Policymakers are working to address rural health challenges, explained Cara James, PhD, of the Centers for Medicare & Medicaid Services.  James described the agency’s efforts, which aim to improve the quality of rural health and the sustainability of rural hospital systems while also giving communities the autonomy to design a program that works best for them.

Access to Innovative Medicine

Rural or urban, patients who need innovative medicines like cholesterol-lowering PCSK9 inhibitors are fighting to get it – and not always with success.  In a panel discussion titled, “Access Anguish: When is Enough Enough?,” Keith Ferdinand, MD, of the Association of Black Cardiologists reflected on insurance denials for at-risk patients who had not responded adequately to statins.  It’s a “huge problem,” Dr. Ferdinand remarked, noting that for certain patients, “Just eating salmon and jogging ain’t going to do it.”

Delays in access can be dangerous, especially for patients who are born with a genetic predisposition to high cholesterol – a condition known as familial hypercholesterolemia, or FH.  The condition defies stereotypes about high cholesterol, afflicting people who are otherwise healthy and active. Few understand the irony as well as Jeff Kwitowski, an FH patient who saw his father die at age 60 from a heart attack.  “When I was 12 of 13, my cholesterol was already 400,” recalled Kwitowski, an avid runner. His daughter Cora also has inherited the disease and requires medication to lower her cholesterol.

Despite their risk, FH patients frequently face barriers to prescribed medicine.  So explained Cat Davis Ahmed of the FH Foundation.  Ahmed noted that 90% of FH patients go undiagnosed.  Those who do receive a diagnosis and are then prescribed a PCSK9 inhibitor are “at the finish line almost,” Ahmed described, “Then they’re denied.”

Harry Gewanter, MD, of the Alliance for Transparent & Affordable Prescriptions explained that the “extremely opaque, extremely complex” drug supply chain is part of the problem.  Pharmacy benefit managers, the middlemen who manage prescription drug benefits for major health plans, exacerbate the issue.  PBMs may make coverage decisions based on what’s financially advantageous to them through the drug rebate system – even if those decisions complicate access for patients at risk of heart attack, stroke or death.

And while insurers have argued that rejections occurred because physicians prescribed the drugs to the wrong patients, data show otherwise.  The Institute for Patient Access’ 2019 access report card reveals that even patients who have diagnosed FH, are already on a statin, or have already experienced a cardiovascular event are being denied at a rate of roughly one in three.

The issue came to a head recently when manufacturers of PCSK9 inhibitors slashed their prices by 60% — but patients saw no benefit.  Dr. Gewanter speculated that the lure of a lucrative rebate led PBMs to stick with the higher price tag rather than adjust to the new list price and lower patients’ out-of-pocket burden.

Comorbidities introduce another layer of complexity to access challenges.  Sarah Cassagrande, PhD, of Social & Scientific Systems, Inc. explained that the prevalence of diabetes has steadily risen in recent years, and people with diabetes having an increased risk of cardiovascular disease and stroke.  Despite their risk, however, more people are not getting the care they need, “missing important points of contact with physicians, which can result in more comorbidities.”  

Perhaps that’s because the burden of navigating the health care system’s complexities rests almost solely with the patient.  “You go to two different doctors, and you’re the person who has to coordinate,” explained Connie Newlon of WomenHeart, who at 47 years old has undergone quadruple bypass and continues to deal with a family history of heart disease as well as comorbid conditions. The frustration resonated with Jim Barton of Mended Hearts, who explained that his cardiologist felt pressed for time, further increasing the pressure on patient and provider alike.

Emotion, Stress & the Human Heart

The stress of getting cardiovascular care isn’t just irksome; it may also be unhealthy.  In his keynote address to the summit audience, New York Times bestselling author and cardiologist Sandeep Jauhar, MD, described the interconnection between the physiological heart and the metaphorical one.  Highly stressful events such as the loss of a spouse or sibling can actually trigger a physical change in the shape of the heart organ, Dr. Jauhar explained.  

Dr. Jauhar, himself a heart patient with a family history of cardiovascular events, explained that emotional well-being can influence heart health.  Research suggests that stress management may be even more strongly correlated with artery disease than exercise, Dr. Jauhar explained, while patients who are depressed after heart attack are more likely to die than those who are not.  “The emotional heart affects its biological counterpart in surprising and mysterious ways,” Dr. Jauhar summarized.

The Diabetes-Cardiovascular Connection

As the day’s final panel conveyed, at least one way to minimize stress for heart patients may be to offer a more holistic, team-based approach to caring for patients with both diabetes and cardiovascular disease.  “This is a huge issue, a multifaceted issue,” explained Alyssa Pressley, of the American Heart Association.  The organization recently launched a “Know Diabetes by Heart” campaign to raise awareness about the connection between the two conditions.  

Nancy D’Hondt, RPh, CDE, of the American Association of Diabetes Educators emphasized the importance of working to empower people with diabetes to better understand and manage their disease.  But for some regions this is a tall order.  Robin Diggs Outlaw, MPH, of the District of Columbia Department of Health described the “staggering” rates of diabetes seen in DC, where African American residents are three-four times more likely than other residents to have diabetes.

The group emphasized the value of evidence-based self-management programs, diabetes education, lifestyle changes for patients.  But they also noted the growing importance of medications that carry cardiovascular benefit in addition to treating diabetes.

The event closed with remarks from Nick Morse of the American College of Cardiology.  Morse reiterated the day’s themes of access and advocacy, urging participants to continue conveying the voice of patients to policymakers and to put the day’s sentiments into action. The second annual cardiovascular health policy summit was convened by the Institute for Patient Access and hosted by the Alliance for Patient Access and the Partnership to Advance Cardiovascular Health.  See more from the day’s proceedings with #CardioSummit2019.  

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