The pharmaceutical industry has successfully harnessed the power of patient groups to help in their advocacy efforts throughout state capitals and in Washington, D.C. According to the most recent data available, drug companies and their trade groups poured over $162 million into patient groups in 2015. Today’s figures are sure to be much higher, particularly as the public clamors for action to control skyrocketing prescription drug costs.
No one can debate that these groups, usually focused on a particular disease state, have been highly effective foot soldiers. While drug company executives may not be the most sympathetic advocates, it is hard not to want to help a patient who is facing a life-threatening disease when they come to advocate for a cause. These patient advocates are also savvy spokespeople who are readily available to speak to local or national reporters or a civic group.
Some of these organizations have even spoken out against the 340B discount program, often echoing the talking points of the drug industry. When I have reached out to patient advocates, many of them are frankly unaware of 340B’s importance in their own communities, particularly for our most vulnerable patient populations. After having a conversation, they often determine that aligning with Big Pharma on this issue is not in their best interest. Nonetheless, many of them will remain neutral in the 340B debate, and some groups continue to advocate positions that are harmful to safety net providers, their patients, and their community.
340B provider organizations and their members have done an admirable job educating policymakers and other stakeholders in the battle over the future of the 340B program. Most of the focus has been on how important 340B savings are to safety net providers in their mission to provide comprehensive healthcare to all patients regardless of their ability to pay. There also have been some worthy efforts to engage patients and clinicians to tell their 340B stories and for patient groups to speak out in support of the program.
Nonetheless, there has never been an organization solely focused on the voices of the patients and communities that ultimately benefit from the 340B program. “There is a distinct need to personalize the program and to tell the story of how it affects individual lives in tangible ways,” says Peggy Tighe, a longtime 340B advocate who oversees the non-profit group Ryan White Clinics for 340B Access. Tighe and other 340B advocates have decided to do something to address this void.
Enter Community Voices for 340B, a non-profit organization determined to elevate the voices of patients and community leaders. CV340B aims to educate, enable, and inspire support for the 340B program at the local level by helping individuals and community leaders tell their side of the story: why 340B is vital to them and why a sustained and vibrant program is an essential tool for protecting and improving public health, especially for medically under-served populations.
“The premise of CV340B is that the average American does not know anything about the 340B program and its impact on the community,” says longtime 340B leader William von Oehsen. “We are going to try to change that. It’s a daunting task but we have to start somewhere,” he adds. CV340B plans to undertake a targeted educational campaign in key parts of the country, working with grassroots and grasstops organizations to educate patients, family members, community representatives, and faith-based, business, and student leaders about the benefits of 340B within their communities.
An essential part of the education process will be to document the various ways 340B is meeting the needs of patients within the community – whether by helping patients comply with their treatment regimens, supporting disease-specific outreach programs, staffing free care clinics, providing transportation or housing services, or otherwise assisting patients in overcoming barriers to care. CVB340B’s first research initiative is to fund a study conducted by the University of Illinois at Chicago that compares the safety net role of 340B hospitals to hospitals that are not eligible for the program. CV340B will record and disseminate these stories for public consumption. Through traditional and new media, community leaders will be empowered to document their experiences with the 340B program and their support for it.
The group has received seed funding from a handful of pharmacy service companies and clinics that support the program’s mission to enable covered entities to stretch scarce federal resources as far as possible, reaching more eligible patients and providing more comprehensive services. CV340B is now contacting foundations and other philanthropic groups seeking additional funding.
This funding also will help CV340B get the word out about the program and the important work occurring in the field. Once community leaders are aware of 340B’s value, they will need tools to communicate their support for the program. The group believes these leaders will be empowered to tell the 340B story, sharing the successes with those able to drive decisions to keep the program viable. CV340B plans to provide the tools and resources to help those champions engage beyond their communities and ensure that decision makers receive this message.
CV340B intends to serve as a force-multiplier in support of efforts to protect and defend the 340B program. In time, the group will create a nationwide network to make sure both the public and elected officials are aware of and appreciate 340B’s importance. One of their goals is to explain how the 340B program works and to strongly push back against the drug industry’s aim to limit discounts to uninsured and low-income patients. While 340B providers certainly provide discounts or free drugs to these patients, they do so much more. Since the program is structured so that providers obtain the discounted medicine, it enables them to provide the full continuum of care that would not be possible if the program is limited or transformed altogether.
CV340B’s entrance into the 340B debate couldn’t be more timely. I encourage 340B supporters to reach out to the organization and see how you can help in this exciting and critically important initiative.
…In case you missed it, I encourage you to read my recent op-ed in USA Today. The piece focuses on the importance of the 340B program to rural America and why the President is making a big mistake to push the courts to overturn the Affordable Care Act. As many of my readers know, the ACA expanded 340B to rural hospitals, and if the Administration is successful in convincing the courts to throw out the law, 340B discounts disappear for rural providers and their patients. While it is possible Congress will eventually restore key elements of the ACA, it will take time, and there is no guarantee that there won’t be changes made to the 340B program.
…Earlier this month, HHS Secretary Alex Azar issued a final rule that will require the pharmaceutical industry to disclose their list prices in T.V. ads. Fox News Radio reached out to get my perspective, and you can hear my thoughts on their daily podcast. The interview begins at the 12-minute mark and lasts about 11 minutes.
…Please join me on May 22 at 1 PM ET to hear the latest developments on the prescription drug pricing battle in Washington D.C. Not only will you get the latest information on the hot topics that are being debated on Capitol Hill and the White House, you will also get an update on key 340B developments and what they mean for you. Registration for this event is now closed. To learn about future events, subscribe to our newsletter.