Wednesday, August 8, 2007

PhRMA and PPArx: How much are they really helping patients in need?

Healthcare reform is all the buzz in political discussions during this campaign season. As each presidential candidate reveals his/her proposed healthcare plan, the merits of each plan elicit debate. But whose plan seriously addresses the high pricetag of healthcare?

Fortunately, the pharmaceutical industry understands our plight and want you to know they care. That's one reason the Partnership for Prescription Assistance (PPA)was launched in April 2005...to get the word out that help is available. At one time or another, you've probably seen the TV ads featuring the 'Help is Here Express' where a big orange bus travels throughout all 50 states to push the promise of 'free or nearly free' medications for patients who cannot afford their prescription medication.



Who is the force behind PPA? The Pharmaceutical Research and Manufacturers of America, PhRMA, the pharmaceutical industry's lobbying group.

"PhRMA's mission is winning advocacy for public policies that encourage the discovery of life-saving and life enhancing new medicines for patients by pharmaceutical/ biotechnology research companies. To accomplish this mission, PhRMA is dedicated to achieving in Washington, D.C., the states and the world: 1. Broad patient access to safe and effective medicines through a free market, without price controls; 2. Strong intellectual property incentives, and; 3. Transparent, efficient regulation and a free flow of information to patients." - phrma.org

Named president and CEO of PhRMA in January 2005, Billy Tauzin previously served as the Chairman of the House Committee on Energy and Commerce (HCEC). As chairman of the HCEC, he helped President George W. Bush win passage of the Medicare Prescription Drug Improvement and Modernization Drug Act of 2003 which was "intended to alleviate financial pressures caused by medical expenses." With tax provisions established in the 2003 Medicare Act, consumers are encouraged to purchase high-deductible medical insurance plans and open health savings accounts. The idea is that "people seeking medical assistance or prescription medicine will be more cost conscious" and will have "a financial incentive to find the lowest-cost service provider."

So as consumers of medical services and pharmaceutical medications, we are supposed to be more cost conscious. Beyond being cost conscious, if not frugal in seeking medical attention, what are we supposed to do if we cannot afford to fill our prescriptions with or without insurance coverage?
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One option is contacting the Partnership for Prescription Assistance which appears to be the brainchild of APCO Worldwide Inc.®, "a global communication consultancy specializing in building relationships with an organization's key stakeholders." APCO works to protect a client's reputation and create value by "pushing the boundaries of communication..." - apcoworldwide.com

APCO offers a variety of services to address challenges their clients face and is staffed by "former elected leaders, ambassadors, government officials, political consultants, journalists and executives from both business and the nonprofit community."

A sampling of APCO's strategies:

Corporate Responsibility - "Whether forging innovative partnerships with governments and NGOs to accomplish joint goals; promoting and communicating sustainable business agendas; or leveraging enhanced transparency to increase public trust, APCO's team can show you how to turn your CR investment into a tangible Return on Reputation (ROR)."

Grassroots Outreach - "Public opinion and government policies affect everyone, yet policy-makers and the media tend to ignore one side of the issue if they are not hearing that perspective, potentially resulting in disastrous consequences. APCO makes sure clients have articulate and vocal allies to help send out and amplify common messages to elected leaders and the media. Working together with like-minded groups is critical to ensuring that public attention is directed toward an issue in a way that can win the day, rather than focusing attention back on a single organization promoting that issue."

Issue Management & Public Education Campaigns - "Drawing on our detailed knowledge and understanding of the political process, APCO develops campaigns that help educate the public and policy makers. APCO's campaigns achieve tangible business successes for our clients and have won awards internationally."

Media Relations - "Reporters, editors and news directors want timely information from credible, accessible sources. Because many of our staff are former journalists, we know how to provide the media with news they can - and do - use. APCO successfully places over 150 news stories and 100 opinion articles per month for our clients. APCO's in-house team of media experts also offers clients comprehensive media and message training."

Government Relations - "Through direct advocacy, relationship building and strategic counsel, we support clients and their solutions with elected leaders and government officials. Our staff includes practitioners who have served in the positions of those we seek to influence. Armed with that experience and knowledge, we develop tailored campaigns to achieve our clients' goals."
Read how APCO helped to launch the Partnership for Prescription Assistance.
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So how many Americans are being helped by PPA's humanitarian effort?

According to a July 23, 2007 press release, Cora Simpson of Lexington, Kentucky, became the four millionth person helped by the Partnership for Prescription Assistance. "Simpson takes four medicines a day, and found nearly 10 programs through the PPA that could potentially help." - pparx.org

"...could potentially help" - What?!! I could potentially mop my kitchen floor tomorrow, but that doesn't mean that I intend to or that I will. And you can't hold me to the promise I might be able to mop the floor.

Just moments ago, I conducted a search for programs to assist in obtaining a popular SSRI antidepressant, Zoloft®. The search produced 5 matching and non-matching programs. But 4 of those results are discount drug card programs (some requiring a fee) which offer the potential of 0%-75% discount off the cash retail price. And from personal experience with the one program offered directly by the drug manufacturer, assistance may likely be denied for dubious reasons.
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How reliable is the four million count?

In the design of the PPA website, pparx.org, Mindshare Interactive Campaigns LLC incorporated a tracking system used to monitor aggregate information about how targeted audiences were utilizing site tools. For instance, they are "able to tell how many and which drugs are being searched...how many people are getting successful matches and what specific program applications are being downloaded or printed."
Read here for more information regarding other design features of the website.

But wait...?

Doesn't that mean each time I conducted a search and found any program...matching or non-matching, free or with fee...I helped to inflate the numbers. During the past two years, I have conducted several searches and even called the 800 number, but none of these efforts provided any tangible benefit to me in the form of 'free or nearly free' medications.

Read here an informative and entertaining article, BIG PhRMA, BIG KaRMA, by David Schankula regarding the big four-million moment in Lexington, Kentucky.
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But where is the follow-up with the patients using the PPA service?

Or what is the accountability of the member organizations?

Where are the statistics measuring how well the member organizations, specifically the pharmaceutical companies, are fulfilling their promise of help to those in need?

For example, I'd like to see an audit of the Pfizer Connection to Care program, through which Zoloft is available, addressing the following:
1. How many new patient applications are received in a calendar year?
2. How many of those applications are denied initially?
3. How many of those denied applications are appealed?
4. How many of those denied applications are approved on appeal?
5. What are the three most common reasons for denial?
6. How many self-employed persons have been discriminated against because the program refuses to recognize the adjusted gross income as representing total income?
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Basically, prescription assistance programs are not new by any means. And the Partnership for Prescription Assistance is not the only source of information regarding available programs, although it is the flashiest!!

According to my research, the most impressive and exhaustive listing of programs is available at NeedyMeds.com, developed in 1997 by Dr. Richard Sagall of Gloucester, MA. This is an easy-to-use site which provides more information than PPA, even when comparing entries for the same programs. If I were acting as an advocate for a patient, needymeds.com is where I would start my search.


3 comments:

  1. I was a patient advocate for a nonprofit organization and the bulk of my tasks was PAPs for un- or underinsured clients. The processes vary from relatively simple to mind boggling. Each manufacturer, and sometimes different drugs by the same manufacturers, has its own unique program, process, eligibility requirements, timetable, and documentation requirements. For most clients I was a very necessary advocate in organizing their cases and communicating with the various manufacturers. They couldn't have done it alone.

    One of the most common requirements by these programs is documented proof of "no coverage" because the manufacturer is the "program of last resort." For most of my clients that meant a written denial from state Medicaid and sometimes even SSD (disablility), not to mention any local or county programs. This could take months, during which the client would have to scramble to obtain meds through us, Catholic Family Services, and the like.

    I am not at all surprised that they're faking the numbers the way you describe. I also understand that this "free" outfit also charges a processing fee just for giving patients access to information that is already available with a little digging (contacting the manufacturer or using a site like needymeds). And a lot of them don't even help with the paperwork. It's up to the patient to figure out what docs to gather and organize and send in. Boy, if I was really unscrupulous I'd set up a website like that and charge for snail/emailing 800 numbers, too!

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  2. Thank you, Miss Kate, for your comment. I have been through the process of application/denial a number of times in the past two years for various assistance programs. And the purposeful complexity is simply mind-boggling.

    The Partnership for Prescription Assistance seems like a good idea....if they actually accomplished what they portray in the media. I did take the time to go through the process and found it useless. For a description of my experience with PPArx, read Rx Outreach Rocks! Rx Outreach does charge a fee for processing the meds but their service could not be more simple and I am a satisfied customer.

    Also, just to clarify for the readers, PPArx did not charge for their 'service.' However, there are numberou other programs on the web who do charge fees for their 'free' medication services. Patient beware!

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  3. I work with a new company that works with the Patient Assistance programs. Our service is a little different in that we do all the paper work and communicate with the doctors to get the scripts and proper sign offs. We are a for profit company, but are fees are lower than most and our service more complete.

    Russ Nicley
    http://www.rxaid.us

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