NCL health policy updates | Health Advisory Council Newsletter | Fall 2019

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“Clostridioides difficile Infection: A Public Health Threat in Plain Sight" panelists

NCL health policy at work

Medication safety

NCL continues to have a strong focus on counterfeit drugs, both in the policy arena and with consumer education. We issued a warning against the White House announcement to open a pathway for importation of drugs from outside of the United States. The unworkable proposal not only poses safety and purity challenges, but without requiring any potential cost-savings to be passed on to the consumer, there are no guarantees that it will save consumers money.

On September 24, NCL partnered with Partnership for Safe Medicine for a Hill briefing focused on the dangers of drug importation. Presentations by enforcement experts and individuals who have lost loved ones because of a counterfeit drug emphasized the need for a secure pipeline for U.S. medication. NCL shared our resources on medication adherence with attendees.

Building on NCL’s successful Fraud.org, NCL is poised to launch a new action center on counterfeit drugs. Our Health, Fraud, and Communications teams have collaborated with new HAC members FDA MedWatch to develop this exciting initiative. The site will help consumers avoid fraudulent online pharmacies and give them tools to report any suspicious medications to authorities. Look for an announcement of the website launch at the end of October. Please share these new resources. Many thanks to our project funders: Allergan, Celgene, Eli Lilly, Gilead, PhRMA, and Pfizer. Contact Patricia Kelmar at patriciak@nclnet.org for more information. 

The Hill published NCL’s op-ed on August 15 calling for heightened FDA oversight of compounding facilities and increasing regulation of their manufacturing and selling practices. Currently, only 56 percent of states even track the number of sterile compounders operating in their state, and an even smaller 30 percent of states require compounders to report “adverse events,” i.e., death, life-threatening experiences, hospitalizations, or disabilities due to compounding, according to a Pew report. Additional oversight is needed by the FDA to ensure public safety, especially in those states that are doing nothing to track or inspect compounding facilities.

Script Your Future

NCL is gearing up for the 2020 Script Your Future Medication Adherence Team Challenge. The Team Challenge in an interprofessional public health competition that convenes students of pharmacy and other schools of health professions to raise awareness about poor medication adherence. Throughout the course of a two-month period, student health professionals compete to conduct outreach in their communities and implement creative solutions to address nonadherence as a critical public health issue. Stay tuned for exciting changes planned for the 2020 Team Challenge (January 20 through March 20, 2020). Please contact Nissa Shaffi at nissas@nclnet.org if you can serve as a volunteer reviewer. We need volunteers!

Vaccines

NCL continues to highlight vaccines as extremely safe and effective in protecting consumers’ health. In a follow-up to NCL’s presentation to the CDC this summer, NCL also attended the National Vaccine Advisory Committee public meeting in September to connect with Committee members about our work in this area and our other health priorities.

To improve vaccine uptake, NCL believes it is important to improve quality through measuring immunization status. We joined members of the Adult Vaccine Access Coalition (AVAC) in a meeting with the National Quality Forum to find ways to improve quality through the use of vaccine composite measures. We also signed letters from AVAC to CMS supporting the inclusion of the Adult Immunization Status (AIS) Measure in Medicare. The AIS measure is a composite measure composed of several age-recommended vaccines for adults (influenza, pneumococcal, zoster and Tdap vaccines). For more details on the October 1 letters see AVAC’s website updates.

And during IDWeek, NCL joined the Infectious Diseases Society of America October 3 Tweetstorm on #WhyIVaccinate to share vaccine-positive messages.

Patient safety

Patricia Kelmar, NCL’s director of health policy, presented at a panel (image at top) on October 3 during IDWeek, entitled “Clostridioides difficile Infection: A Public Health Threat in Plain Sight.” C. difficile has been declared an urgent threat by the CDC and takes the lives of 29,000 individuals a year. It is prevalent both in clinical settings and now even in the community setting, is persistent, and is tormenting to the infected person. The panel was moderated by Dr. Catia Matos Ferreira, the Global Medical Lead of Medical Affairs at Pfizer with representatives from The Gerontological Society, the Peggy Lillis Foundation, the Vietnam Veterans of America’s Veterans Health Council and the National Black Nurses Association as well as a physician from Washington U. School of Medicine. Patricia explained the importance of health care professionals taking a proactive role in informing consumers about the type of infection they have, and especially in the case of C. difficile infections, giving consumer-friendly written discharge instructions to patients and their families to avoid spread of the infection and to prevent reinfection of the affected family member.

Health care costs

NCL has long supported the need for consumer protection from surprise bills – those charges billed to a consumer when the insured individual inadvertently receives care from an out-of-network provider. On September 26, NCL joined with other consumer groups to form No Surprises: People Against Unfair Medical Bills with three guiding principles: to ban bills, contain total costs of healthcare, and to ensure comprehensive protection nationwide. Congressman Frank Pallone (D-NJ) joined our press conference urging Congress to address this consumer issue before the end of the year. We urge all of our members to share this Action link to generate grassroots support of the campaign.

Air ambulance

Patricia Kelmar will serve as the consumer member on the Air Ambulance and Patient Billing Advisory Committee (AAPB Advisory Committee), appointed by U.S. Department of Transportation (DOT) Secretary Elaine L. Chao. This 13-member committee is tasked with making recommendations “to improve the disclosure of charges and fees for air medical services, better inform consumers of insurance options for such services, and protect consumers from balance billing.” Meetings will be public with the first to be scheduled in early 2020. The charter of the Committee can be found here. Patricia welcomes any input from HAC members as she serves as the consumer representative on this Committee at Patriciak@nclnet.org.

Opioids misuse prevention

Working with our partners Allied Against Opioid Abuse, NCL released a toolkit with four important resources to assist consumers by answering common questions, addressing myths and empowering them to play their part in the fight against opioid misuse.

The tools include:

  • Ten Things Consumers Should Know About Prescription Opioids
  • Myths and Facts About Prescription Opioids
  • Frequently Asked Questions About Prescription Opioids
  • What YOU Can Do to Prevent Prescription Opioid Misuse and Abuse

Please share broadly.

CBD labeling and consumer implicationsCBD products

On October 3, NCL participated in a “Lunch and Learn: A Primer on CBD” to begin discussing the importance of better regulation and more consumer information with this new popular ingredient in a variety of products. NCL highlighted the extensive number of products which claim CBD as an ingredient (from water to CBD infused athletic wear). We highlighted the confusing labeling and the plethora of false therapeutic claims. NCL raised questions about how consumers can keep themselves safe in the CBD marketplace that has seen little to no regulatory enforcement. There is one FDA approved medication, Epidiolex, which is used to treat two types of intractable, childhood onset epilepsies—Dravet syndrome and Lennox-Gastaut syndrome. Other therapeutic uses might exist but none have been tested through FDA’s rigorous approval process. More to come as we dive deeper into this consumer health issue!