PATIENT ADVOCATE NEWS Dear Patient Advocates,
EDITOR’S NOTE
MAY JUNE July 2011
News and information about patient assistance programs and other health care
This has been a busy summer. While the national news has been full of drama (a sensationalized trial and verdict, a looming debt crisis, a Royal visit), things here in Gloucester are a little more calm. But that doesn’t mean we haven’t been busy. We continue to add to our databases and spread the word about our discount drug card. In May 2011 alone, the card was used 19,000 times and saved folks $575,000 in prescription medicine costs. Our incentive grant program is still going strong, and we encourage small organizations to apply for a grant to help them automate their PAP application process using our PAPTracker software. We also launched the Spanish-language translation version of our site so even more people can use our resources (see page 5 for details). Friends, stay cool, and stay well. Vikki Sloviter Editor
Last fall LegitScript founder and president John Horton contacted us to ask about being featured in our newsletter. In light of a recent report that stated more than 94% of Internet pharmacies are illegitimate, we thought it was a good opportunity to talk to John about his online pharmacy verification organization. Vikki: Hi. Tell us about the history and mission of LegitScript. John: LegitScript was founded in May 2007, and our mission is to identify and review as many online pharmacies as possible to help people who choose to fill a prescription online do so safely and legally. After we started, the first thing we did was to contact the National Association of Boards of Pharmacy (NABP), which represents pharmacy regulators in the U.S., Canada and elsewhere, and ask how we could work with them and help support their important mission. We’re the only online pharmacy-monitoring service endorsed
by the NABP, other than the NABP itself— something we’re proud of. We’re also glad to be associated with other reputable and helpful organizations like the Alliance for Safe Online Pharmacies. Vikki: Since their inception, how have online pharmacies evolved, and what effect have they had on American consumers’ ability to access prescription medications? John: Internet pharmacies have made it tremendously easy to order prescription medications with the click of a button— and that’s a double-edged sword. On the (Continued on next page)
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one hand, legitimate Internet pharmacies are incredibly convenient and often result in cost savings. Particularly for a person who is in a remote area, or perhaps has difficulty leaving the house to visit a pharmacy in person, online pharmacies have really been a tremendous help. But the other side of the coin is the proliferation of unscrupulous Internet pharmacies that are equally as convenient but simply unsafe, by not requiring a prescription, selling unregulated medicines and/or not being appropriately licensed. Vikki: In a nutshell, tell us what concerns consumers should have about ordering meds online. How do we know when we’ve encountered an illegal online pharmacy and what do we do about it? John: The best way to make sure that an Internet pharmacy is legitimate is to make sure it’s either approved by the NABP as part of its Verified Internet Pharmacy Practice Sites (VIPPS) program (see nabp.net for more information) or is on LegitScript’s “approved list” at legitscript.com. Rogue online pharmacies will go to just about any length to convince you that they are legitimate, including using fake Seals of Approval or listing a fake pharmacy license on their website. It’s also important to remember that if it seems too good to be true, it probably is. No prescription required? The very reason that prescription drugs require a
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prescription involves safety—the need for medical supervision. And if an Internet pharmacy is willing to not require a prescription, it shouldn’t come as any surprise if they are selling substandard drugs. Vikki: How does LegitScript verify online pharmacies and ensure they adhere to the NABP standards? What kind of process is involved? And how many illegal online pharmacies are there? John: We’ve documented over 125,000 illegal Internet pharmacies over the last three years; many are now offline, but at any one time, we estimate that there are between 25,000 and 40,000 rogue Internet pharmacies online. Our verification process requires adherence to 11 NABP standards. In some cases, it’s very straightforward to determine compliance—the presence (or absence) of required pharmacy licenses, for example, and they typically need to be registered with the DEA as well. We also require appropriate privacy protections. Probably the most extensive and complicated part of our process involves analyzing who the Internet pharmacy “really is” and if there is something illicit going on behind the scenes: drugs being sourced from an illicit source, or if the individual or company owns other illegal websites. We’ve seen cases before where a seemingly legitimate Internet pharmacy (Continued on next page)
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will apply for approval, but after investigating them, we find that they are really just a front for a criminal network of hundreds of other illicit sites. We obviously won’t approve someone like that. Vikki: LegitScript not only verifies online pharmacies, but also investigates questionable ones. What exactly does that entail? What kinds of penalties are there for running an illegal online pharmacy? John: It really depends on what the illegal Internet pharmacy is doing. Problems can range from the relatively innocuous to the deadly. If the problem is really minor—say, the Internet pharmacy has a privacy policy but it doesn’t quite include everything it’s supposed to under HIPAA privacy regulations—the best approach is just to let the pharmacy know about the problem and ask them to correct it. But most illicit Internet pharmacies are engaged in intentional criminal activities, like selling drugs without a prescription. Depending upon the extent of it, it could mean prison time. As far as our investigative techniques, I think that the simplest way to explain it is that Internet pharmacy monitoring involves two types of expertise: first, knowing about the practice of pharmacy; and second, knowing about cybercrime, because that’s exactly what rogue Internet pharmacies are involved in, is “drug-related cybercrime.” So we don’t only look at whether the website’s pharmacy practice is appropriate, but also use a pretty advanced cybercrime toolkit to tear apart the website, dissemble the engine and look at what’s really going on under the hood.
Vikki: Why is the NABP stamp of approval considered the gold standard for Internet pharmacies? What criteria does the NABP require that give consumers peace of mind that they are ordering safe, legal medicine? John: The NABP stamp of approval is the gold standard because of what the NABP is: a more than 100-year-old organization that represents the government agencies in the U.S. (as well as in Canada and other countries) that license and regulate pharmacies and pharmacists. The criteria developed by the NABP and utilized by LegitScript are designed to ensure that Internet pharmacies offer you the same safety and authenticity protections that a brick-and-mortar pharmacy would if you walked in the door: pharmacy license, authentic drugs, requirement of a prescription, access to a pharmacist in case you have an adverse reaction, and so forth. Vikki: What have been some of the biggest hurdles in your organization’s ability to verify and enforce pharmacy standards? John: I don’t think of it exactly as a hurdle, but an ongoing challenge is staying on top of how rogue online pharmacy operators do business. They continually try and slip past our filters, or the filters of companies we help, like Google (for its advertising program). Cybercriminals invest significant time and resources in developing new tools to trick Internet users, regulators and watchdogs. A high priority for LegitScript is to stay one step ahead of cybercriminals to make sure they can’t fool us, or fool Internet users.
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pharmacy legitimacy: safety, legality and transparency. Those three principles can be found in all of the standards that both LegitScript and the NABP use to require Internet pharmacy legitimacy.
Vikki: How is LegitScript funded? How large is your organization, and what kind of fees are involved for using your services? John: LegitScript is entirely owned by its As far as transparency, think about the staff, and I personally (along with a few transparency that a legitimate brickother employees and family) provided and-mortar pharmacy gives you: You can the start-up funding. After our first walk in the door, see the pharmacist, you couple of years, I’m happy to say that know where it’s really located, and you we’re in the black, and our revenue can probably see the license on the wall. comes from our clients since we offer You can see that the drugs are real, and paid services. An example is our what’s more, there’s a real disincentive relationship with Google: we monitor for the pharmacist to do something Google’s Internet pharmacy ads in the illicit, since you know who and where U.S. and several other countries to make are. ThatSIGN-UP transparency is really IMPORTANT: NEW PAPthey UPDATES sure that only legitimate Internet lacking for most Internet pharmacies; pharmacies are allowed to advertise even those that aren’t illegal or criminal, online. We do not charge Internet and which probably meet our standards pharmacies for our verification process. (but due to the lack of transparency, can’t be fully verified). Vikki: Finally, if you could change anything about the way Internet I appreciate the opportunity to have pharmacies do business, what would it provided you and NeedyMeds’ readership be? this information! Visit us at John: I think transparency is the key. legitscript.com for more information. There are really three pillars of Internet
Feel free to make copies and distribute our card to your clients. FRONT
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PATIENT ADVOCATE NEWS|MAY JUNE JULY 2011
NeedyMeds Now Available in
SPANISH With the help of a generous donation from Merck & Co., Inc. we are pleased to announce the launch of the Spanish version of our website. Recognizing the distressing fact that more than 39% of Hispanic Americans do not have health care insurance, NeedyMeds initiated this outreach project eight months ago to help target Spanishspeaking Americans that need help and can benefit from our site, in Spanish. A three-person team from NeedyMeds, led by our database manager Robin Hoffman, contracted with Globalvision, a professional translation company, and a computer programmer to complete the translation. Part of this significant undertaking includes a change in format of program listings. Program information will be in a more concise bullet-point format. The Spanish-version site is accessed by clicking on the “Español” link on the left side of the home page. All content of the most popular sections of the website have been translated and include the patient assistance programs, disease-based assistance programs, the free clinics and the drug discount information sections. NeedyMeds also has a Spanish-English bilingual staff member to help assist Spanish-speaking callers.
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NeedyMeds News TE WEBINAR UPDA
tact ger need to con n lo o n u o Y s! webinar ed our NeedyMeds tinue to be post g n n co vi ro ill p w im es e at ar d We ter. The n you of time to regis ate of the sessio d e th n o k ic cl Elizabeth ahead do is ation All you have to with the registr e ag p a to u on the website. yo ng a month. tend and it’ll bri webinars twice ee fr r u o would like to at ld o h (EST) to n standard time e will continue er W . st n ea io in at rm ed st fo in are po te that the times a webinar. Also, please no registering for en h w ly g in rd and to plan acco The NeedyM eds Volunte er Project NeedyMeds has spearhe aded an outr of connectin each progra g low-incom m with the m e people wit with the cos ission h programs t of medicin that will ass e and health ist them care. The Volunte er Project wil l provide an available to informationa those intere l guide that s te d in setting find assistan will be up a program ce programs to help peop using the Ne le edyMeds we bsite. NeedyMeds will provide two importa nt publicatio ns: Volunteer M anual: The m anual will re resources av view the vari ailable on th ous e NeedyMeds up informati website and on most effi how to look ciently to he use this man lp people. V ual as they a o lu nteers will ssist people the costs of who need he health care. lp affording Handbook fo r Planners: This docume instructions nt will includ that address e specific the logistics program. Th of setting up is includes h a volunteer ow to choos program, ho e a location w to advertis for the e, what kind will provide s of specific and more. services you These docum ents will be available as in the Advoc PDFs on the ates section NeedyMeds , under “Volun requested in website teer Project. paper form b ” They can a y emailing E (Elizabeth@n lso be lizabeth Mes eedymeds.o senger at rg).
PATIENT ADVOCATE NEWS|MAY JUNE JULY 2011
Vikki: Hi Samuel. Tell our readers about yourself and how you started working for NeedyMeds. Samuel: I graduated from Gettysburg College in the spring of 2008 with a degree in religion. After spending a couple years wondering just what to do with that degree I came across a job opening at NeedyMeds. One of the things that stuck with me from studying religion was how important compassion for our fellow human beings really is. That is one of my favorite aspects of working here, knowing that we are actually helping people on a daily basis. Vikki: Like many of us at NeedyMeds, you wear several hats. Tell us what your primary job is, as well as the other hats you wear.
Samuel Rulon-Miller
Get to Know
Samuel: I may wear the most hats in the office! I was hired to work in the call center, which I still spend most of my time on, but I also update the free clinic database, the Facebook and Twitter pages, and handle a good deal of the IT work in the office. I always enjoy a computer-problem challenge, from finding lost files to completely setting up new computers. Vikki: Can you tell us about a particular case or situation that brought home the very real fact that there are thousands of people who need help paying for medicine and health care? Samuel: I have had a handful of more difficult calls/situations while on the NeedyMeds helpline. One case in particular was a young man who called and sounded very shaken up. His voice was cracking and it was obvious he was having a very hard time keeping it together over the phone. He was calling looking for help with PTSD, as he had very recently returned from Iraq. It was an honor to know that I was able to help him find assistance, and it definitely altered my perspective on a few levels. Vikki: What are some IT/tech projects that you currently manage for NeedyMeds? Samuel: A lot of what I do in the IT department involves handling problems as they occur. Any time a computer crashes in the office, a printer malfunctions, or the network goes down I am usually the one to handle it. Setting up new computers and hardware is always a treat, I love learning about new technology. It really varies from day to day though as to what I am doing.
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(Samuel continued from page seven) Vikki: We are on Facebook and Twitter and often ask our supporters and users to “follow” us or “Like us.” How important do you think social media is to a nonprofit’s ability to spread its message and services? Samuel: I think social media is becoming more important every day, to all types of organizations. Having set up the NeedyMeds Facebook and Twitter accounts I spent a good deal of time researching not only how to utilize these tools, but also how they operate. Over 40% of Americans are on Facebook, and that number only continues to grow. For many it is becoming their primary source of information. For us it has been a great way to reach out to people who use NeedyMeds and get some real feedback and build relationships, beyond just updating people with news. That's the groundbreaking thing about utilizing social media; it is a two-way street of communication between organizations and people. Vikki: We have an iPhone app for our NeedyMeds discount drug card, and increasingly more health care organizations are starting to use mobile technology to help consumers and patients access health care. Do you think we are ready for a future of electronic, mobile, web-based information sharing? What roadblocks do you foresee in such technology? Samuel: The most obvious roadblock would be financial. Not everybody can afford an iPhone or smartphone. However, it is important to stay ahead of the curve. Regular cell phones used to be out of reach for most Americans, now they are replacing land lines. With time smartphones will come to replace standard cell phones, and suddenly the ability to use this technology will be available to more people. I think we at NeedyMeds are ready for this. The way we store and gather information would remain the same, the only thing that would change is the presentation—our Drug Discount Card iPhone app is a great example of that. Vikki: Finally, when you are not working for NeedyMeds, you are a musician/composer. Tell us about your passion for music. Samuel: Music has always been a part of my life. I started playing the bass guitar when I was 10, and soon after that began playing the upright bass as well. Those are the only two instruments I have formally studied but I have picked up guitar, drums, and keyboards among others. I have played in all types of groups—jazz, orchestras, funk, punk, bluegrass, hip-hop. Any type of music can hold my interest as long as it is sincere. Currently my main project is in electronic music, using computers with standard instruments to make new music. I have always had an interest in recording, and the technology is at a point now where you can have a full recording studio in your computer and manipulate the sounds in real time. It is a lot of fun.
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PATIENT ADVOCATE NEWS|MAY JUNE JULY 2011
Rogue Internet Pharmacies With prescription costs on the rise, consumers look for ways other than going to their local pharmacy to fill their much-needed medications. Buying prescriptions on the Internet has become quite commonplace, but a recent report published by the National Association of Boards of Pharmacy (NABP) found that more than 95% of online pharmacies are not entirely legitimate, and most do not adhere to federal laws or are simply out of compliance with pharmacy practice standards. Despite legislation like the Ryan Haight Online Pharmacy Consumer Protection Act of 2008 that bans the sale of prescription medications over the Internet without a valid prescription, loopholes and failure to enforce have led to continuation and even proliferation of rogue online pharmacies. The NABP conducted a review of 7,541 Internet pharmacies that sell prescription medications, including veterinary prescriptions, and found that 7,234 (95.6%) violated some kind of law or were out of compliance and are subsequently on the “Not Recommended” list on the NABP website. Of these rogue pharmacies: • 6,288 (87%) do not accept insurance • 6,018 (83%) do not require a valid prescription • 4,428 (61%) issue online prescriptions by consultation or questionnaire • 4,036 (56%) do not have a physical address Only 258 (3.4%) of the 7,541 online pharmacies appeared legitimate, with just 28 online pharmacies with VIPPS accreditation, the leading seal of approval program that indicates a pharmacy adheres to federal and pharmacy industry standards. The increasing trend in online pharmacy sales has had an unintended consequence of increased medical emergencies involving prescription drugs. From 2004-2009, the number of emergency room visits involving the misuse or abuse of prescription drugs nearly doubled. The U.S. government and leading organizations like the NABP are working to educate and alert the public about the dangers of buying prescription drugs online. Websites like LegitScript.com, AWARxE.org, Pharmahelper.com help are also good consumer resources to learn more about how to safely buy medications online.
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PATIENT ADVOCATE NEWS|MAY JUNE JULY 2011
PAP UPDATES The Abbott Patient Assistance Program for Diabetes Care has closed. Yervoy Co-Pay Program is new with application available on our website. Elidel has been removed from the Novartis Patient Assistance Foundation Program. New English and Spanish applications are available on our site. INCIVEK™ (telaprevir) tablets is a new FDA-approved drug that is on two patient assistance programs. Check our website for applications. FDA recently approved Victrelis (boceprevir) 200 mg capsules, which is part of Merck’s ACT Program. Application available on our site. SevenASSIST is a new program for NovoSeven® RT (Coagulation Factor VIIa [Recombinant] Room Temperature Stable). Application available on our website. We also have updated applications available on the following programs: Mylan Clozapine PAP KingKare PAP NitroMed Cares Uninsured PAP GSK Access Kogenate Factor Solutions New Spanish applications for SUPPORT Program for Isentress and SUPPORT Program for Crixivan. We have many more PAP application and program updates on our website. Keep checking! For a one-stop place to see PAP updates, join NeedyMeds Forums for free at forums.needymeds.com.
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NM STAFF RICHARD SAGALL, MD President richsagall@needymeds.org JAYE VANDUSSEN Vice President jaye@needymeds.org
BILL KYROUZ Research Associate bkyrouz@needymeds.org
ROBERTA DOWNEY Software Sales Manager roberta@needymeds.org
ABBY MARSH Call Center Representative abby@needymeds.org
VIKKI SLOVITER PAN Editor vikki@needymeds.org
DAMARIS MERCEDES Call Center Representative damaris@needymeds.org
ALANNA FLANAGAN ELIZABETH MESSENGER Call Center Representative Research & Outreach Coordinator elizabeth@needymeds.org alanna@pap-apps.org CYNTHIA FOOTE Call Center Supervisor cynthia@needymeds.org
SAMUEL RULON-MILLER Research Associate samuel@needymeds.org
KAREN GRENHAM Call Center Assistant karen@needymeds.org
TONYA WHITE Research Associate tonya@needymeds.org
ROBIN HOFFMAN Database & Research Manager
robin@needymeds.org
Needy INFO@NEEDYMEDS.ORG CALL US 978-281-6666 FAX US 419-858-7221 WRITE US PO Box 219 Gloucester, MA 01931 NeedyMeds, Inc. is a 501(c)(3) nonprofit with the mission of helping people who cannot afford medicine or health care costs. The information at NeedyMeds is available anonymously and free of charge. NeedyMeds does not discriminate on the basis of race, ethnicity, religious affiliation, gender or sexual orientation.