Friday, May 19, 2017

PAN Foundation Opens HIV Prevention & Treatment Fund

By: Brandon M. Macsata, CEO, ADAP Advocacy Association

The Patient Access Network (PAN) Foundation — a corporate partner of the ADAP Advocacy Association — announced that it opened its fund for HIV Prevention And Treatment. Presently, there are 56 HIV-related medications covered by this program.

Apply Online at
The PAN Foundation is accepting applications for new and renewal patients. People needing financial reprieve from the cost of their HIV-related medications are eligible for assistance up to $3,400 per year (additional assistance may be available, subject to the availability of funding). In fact, nearly 60 disease-specific assistance programs to help patients pay for their out-of-pocket costs are made available by the organization.

The PAN Foundation is an independent, national 501 (c)(3) organization dedicated to helping underinsured patients with chronic and critical illnesses afford their out-of-pocket medical expenses. Over the last thirteen years, they have provided more than 700,000 underinsured patients with over $2.5 billion dollars in financial assistance.[1]

Patients and advocates can apply for PAN assistance by phone at (866-316-7263) or online (Click here to start the application online).

[1] Patient Access Network Foundation (2017).

Thursday, May 11, 2017

Communication is key in creating an environment for shared decision-making

By: Kathleen D. Gallagher, MPH, Patient Advocate Foundation, and Rebecca Kirch, JD, National Patient Advocate Foundation

Patients and families confronting chronic, debilitating or life-threatening conditions at any age and any disease stage require reliable and affordable access to high quality therapies and supportive services throughout the care continuum in the settings that are best for them to optimize their outcomes and experiences. Yet today’s disease-centric care is fragmented across multiple specialists, subspecialists and settings, creating pressures to navigate pathways-driven treatments that overlook quality of life, functional outcomes, other personal priorities or individual characteristics that matter a great deal to patients and their families.

We know that patients rarely experience their symptoms as one isolated problem and can benefit from care that is truly person-centered and involves shared decision making. To accomplish this person-centered health care transformation, knowing precisely what is important to patients and families is paramount. Progress also requires dedicated commitment to enhancing clinical communication that is person-centered and goal-directed – learned skills that are essential drivers for delivering value-based care.

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Better health care value begins with improved communication about goals of care and personal values. Patients and families consistently report that they want to be involved in understanding their disease prognosis and treatment options and making decisions about their care. We chose to address these concerns as part of a grant funded project through targeted online survey efforts. Our primary goal was to examine multiple thematic areas from a broad patient perspective designed to explore the dimensions of what matters to patients.

The following highlights the preliminary analysis of some of the data collected from our virology cohort (HIV+ patients), specifically around the theme of communication. Survey participants were asked a series of 5 questions to gather information on how they wanted to receive health information, how involved they wanted to be in making healthcare related decisions, discussing what matters to them when selecting a treatment option, and their comfort level in broaching the conversation about quality of life with their doctor.

When asked, “how do you like to approach making decisions about your treatment” over 65% of the respondents wanted to make decisions in partnership with their medical versus the 14% who wanted to make their decisions alone or the 5% wanted the physician to make the choice for them. An additional 14% wanted their doctor to explain all of the options to them in detail before working together to make a treatment choice. The message from this data point is clear and supports our hypothesis that patients want dialog and information from their medical team and they want to be partners in making treatment choices.

In regards to doctor initiated conversations about things that are important to the patient in their care (non-clinical outcomes) 60% of respondents stated that their doctor did ask them about “what is important to you as part of making plans for your treatment”. Although this data point is encouraging, what was most compelling was that over 95% of those who answered in the affirmative, followed this question with a positive response to the question “did you feel that your doctor took that information into account when making recommendations”. So not only were the able to have the conversation – but their input was valued and used to identify and select a treatment option that was of value to them.

While only a small selection of the 100+ questions asked in the Patient Value Survey, the preliminary data gathered around patient-provider conversation in regards to treatment and care is encouraging. Historically, the HIV population have been the groundbreakers and drivers of action and having a voice in the way their chronic condition is treated. As we continue to use the collected data to drive a better understanding of what matters to patients, and how best to equip them for conversations about their comprehensive care and planning treatments that provide them the quality of life that they are seeking, we will continue to reach out to our non-profit partners to ensure that all voices are being heard.

Disclaimer: Guest blogs do not necessarily reflect the views of the ADAP Advocacy Association, but rather they provide a neutral platform whereby the author serves to promote open, honest discussion about public health-related issues and updates. 

Thursday, May 4, 2017

AHCA Passed the House Today; Do Not Panic

By: Jen Laws, Board Member, ADAP Advocacy Association, and HIV/transgender health advocate

The American Health Care Act ("AHCA") is not the law of the land...but rather it still is the Affordable Care Act ("ACA") governing our nation's healthcare framework. Let’s preface this fact with the message advocates have been stumping for months: stay vigilant, stay active, and stay on top of your elected representatives. For policy “wonks” and advocates assessing how potential legislation affects the American public, policy impact matters just as much as the political environment.

The American Health Care Act passed the U.S. House of Representatives on the narrowest of margins at 217-213. Twenty Republicans voted “no” on deep concerns of both negative impact on access and quality of care, and due to their seats being vulnerable in the 2018 midterm election (Roll Call, 2017). This vote took three months, one failed vote earlier this year, and days of “arm twisting in the cloak room” to make it happen. For the culture of the House, it is somewhat extraordinary in modern times. Now the legislation rests in the hands of the U.S. Senate.

Vote totals on passage of the American Health Care Act
Photo Source: C-SPAN

The Senate, while subject to more of the weight of Presidential politics, is a different beast entirely (Washington Post, 2017). Presidential politics plays both in favor for those Senators aligned with the President and against those from contentious states due to vulnerability of the seats. With a narrow Republican majority in the Senate, the coming months will see the divisions of the House amplified and thus weakening the possibility of the AHCA in its current form (or any form for that matter) passing the Senate. Additionally, once a Congressional Budget Office “score” is available, the Senate parliamentarian must assess if the bill meets the requirements of the “Byrd rule” as the AHCA is a “reconciliation” measure. Amendments added to the bill as it moves through the Senate committees will further change the CBO score and may make passage even less likely.

Among topics of concern with the bill are popular ACA provisions like consumer protections regarding pre-existing conditions, annual and lifetime limits, and the ability for children to stay on their parents’ coverage until the age of twenty-six. Less popular, though still maintaining wide support is the Medicaid expansion. The AHCA weakens these provisions by giving states the option to “opt out” of Essential Health Benefits, attacking Community Health Ratings, and forming “risk pools” for people with pre-existing conditions. Of note, independent analysis has shown that to adequately fund state risk pools, the AHCA would need to provide for $25 billion of funding. Currently, the AHCA only offers $8 billion over the course of 5 years. The ACA provided for $5 billion and ran out of funds at the 3rd year. The AHCA also structures “punishments” for those who experience lapses in coverage and older Americans. Combining these facts with substituting current subsidies with tax credits, people will face greater likelihood of lapse in coverage and increases in rates due to being unable to afford coverage in the first place. All while cutting funding and adding caps to state Medicaid programs.

Medicaid funding cuts are of special note as Medicaid expansion has eased the burden of other assistance programs like state AIDS Drug Assistance Programs, shortening waiting lists for services, and providing direct and continuous care opportunities for the most vulnerable of the American public.

The aforementioned issues will continue to be the center of the debate on the AHCA and why the CBO has scored the AHCA to cause tens of millions to lose coverage over projected 10 years following implementation.

Differing views in the Senate that label the health care programming and policy as “entitlement” will compete strongly with the attitudes of moderate Republicans that the government should provide protections and an avenue of care for their constituents and consensus will be exceptionally difficult to find. What’s likely to bring moderates on board will alienate Libertarian-minded Republicans, and vice versa. Democrats are expected to behave as a “blue wall” and vote as a caucus against the AHCA. The two Democrat Senators to watch will be Joe Manchin (WV) and Heidi Heitkamp (ND), as the most likely to indicate if the AHCA may gain even a single blue vote and thus is altered enough to gain a moderate majority.

Photo of West Virginia Senator Joe Manchin III and North Dakota Senator Heidi Heitkamp
Photo Source:

The best way for constituents and advocates to make their voices known is, and will always be, to call their elected representatives offices, both at home and in DC, show up to town hall meetings, and take action with advocacy organizations aligned with their values.

You can find your Representative’s contact information here:

You can find your Senator’s contact information here:

Disclaimer: Guest blogs do not necessarily reflect the views of the ADAP Advocacy Association, but rather they provide a neutral platform whereby the author serves to promote open, honest discussion about public health-related issues and updates.