Patient Advocate News Helping you and your clients access medications and health care.
FROM THE EDITOR Up here in the Northeast, the winter chill is certainly in the air, which means it is that time of year again, when we officially ask for your financial support for all the resources we provide for free, every day. We are like public radio and rely on our NeedyMeds audience to help support our efforts. We know individuals and families are still struggling in this uncertain economy, but we also know that we have helped thousands of people save money this year. Please consider donating any amount you think our services were worth to you in 2011. Click HERE to donate. Take care, Vikki Sloviter
Get the Most out of NeedyMeds Not sure where to start using NeedyMeds? Wondering how to find certain information? In this new section we’ll feature a particular NeedyMeds resource to help you find the information you need. Disease-based assistance (DBA) programs help patients with costs associated with diseases or medical conditions. Some cover one specific disease or medical condition, while others cover whole types of diseases, such as all types of cancers, or even all chronic diseases. Some are national in scope, while others are limited to people in specific states or regions. Most have some type of eligibility requirements such as age, diagnosis, residency, or insurance, but most are based on financial need. DBA programs help pay for a variety of expenses. Financial assistance is offered to help cover expenses such as medications, insurance payments, office visits, travel, nutritional supplements, medical supplies and equipment, child or respite care and much more.
There are three ways that a DBA can be searched. Visitors can either search by the 1) name of the disease or medical condition, 2) the area of service (national or state), or 3) name of the program. Because programs are listed in several ways, it's important to know how to find all the programs that can help you, especially when searching by disease or medical condition: • • • •
First, look for your specific disease (e.g. "Breast Cancer"). If your specific disease isn't listed then Look under the general category for your disease (e.g. Cancer All). Look also under the most general category (e.g. "Chronic, Serious or Life-Threatening Illness"). You can also look for programs that may help with a specific need that you may have. For example, if you have breast cancer and chemotherapy has caused you to lose your hair, find "Hair Loss - Chemotherapy Induced"in the Disease and Condition List.
We would appreciate hearing from readers or organizations if there are programs available that offer diseasespecific financial assistance that are not on our website. Please email us at firstname.lastname@example.org.
In this Issue Spotlight on Pulmonary Hypertension Association
PATIENT ADVOCATE NEWS
NeedyMeds News & Updates
Drug Discount Card
Meet NeedyMeds‘ Rich Sagall
PAP Updates Staff Listing
7 Page 1
Spot light on... Pulmonary Hypertension Association Interview with Rino Aldrighetti, President and CEO Vikki: Hi Rino. Thanks so much for talking to me about the Pulmonary Hypertension Association (PHA). Tell our readers about the history and mission of the PHA. Rino: Pulmonary hypertension, or PH, is high blood pressure in the arteries of the lungs that can lead to heart failure. There is currently no cure, and survivability for 50% of people with PH is 2.8 years without treatment. But there are now nine treatments, all of them founded since 1996, and eight of them since 2001. Among the 7,000 rare diseases identified in the U.S., PH now has more treatments than all but two others. The PHA is a young organization that is changing the history of an illness. From simple beginnings — four women around a kitchen table in Florida in 1990 — PHA has evolved in size and complexity. We continue to work every day to end isolation, provide education, involve our constituents in everything we do and find a cure. Founded as an organization for patients, PHA now includes strong medical programming with a quarterly medical journal distributed to 40,000 physicians, a distinct medical website (www.phaonlineuniv.org) and two highly engaged medical sections (one for physicians, the other for allied health professionals) within PHA. Our model of integrating patient, caregiver and medical professional services and engagement is the backbone of PHA’s strength. Vikki: What kind of insurance obstacles do PH patients face and how does the PHA help patients with the costs of care? Rino: Drug costs for PH are significant and, as more patients are diagnosed, insurance companies are paying more attention to costs and watching the disease more closely. One large company recently issued a rule denying coverage for combination therapy for new patients. After speaking to PHA’s PATIENT ADVOCATE NEWS
Scientific Leadership Council and others, the company reversed its decision. PHA has an insurance program that, for example, has been successful in updating information about PH for Social Security disability and that has made that program more accessible for our patients. However, the support needs are much greater than our ability to work on individual cases, so programs like Caring Voice Coalition and NeedyMeds are important assets. Vikki: Our organizations recently became partners, where PHA now offers our free drug discount card to patients and we have a PH disease resource page on our website. Tell us about this partnership. Rino: A few years ago Dr. Sagall and I were staffing booths for our organizations at a patient conference. We got to talking about what each of us was doing and quickly understood the benefits of working together. For PHA, there’s a lot of value in being able to help our patients get some prescription benefits in the very expensive disease that has come into their lives. We appreciate what NeedyMeds offers our patients and hope that the program and its services continue to grow. Vikki: PHA has more than 13,000 members, a strong volunteer base, a fully staffed office and a wealth of resource, educational, medical and support information. What organizational achievements are you most proud of, and what current initiatives or campaigns is the PHA conducting that you’d like our readers to know about? Rino: At PHA, we believe that process is the most important thing. That is, if we build structures that involve our constituencies, then we will progress faster toward our goals of a better life for patients and, ultimately, a cure.
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Spot light cont’d Programs do not get approved unless we fully understand how one or more of our three constituencies (patients, family members, medical professionals) will be involved. For example, the rapid growth of engaged communities and programs for five distinct sub-populations within our larger community has been very exciting over the past two years. Generation Hope for patients in their twenties and early thirties offers a great model for the involvement of young people with very specific issues. Similarly, PH Plus, an email support group for patients (and their caregivers) with PH associated with other diseases offers an important networking and program development opportunity. Through our two medical sections, PHA has offered more than 80 face-to-face medical education programs this year and has seen a rapid growth in online medical education. Our network has grown this year to include over 235 support groups throughout the U.S. An active listserv keeps the leaders in contact with each other on a daily basis, and offers peer-to-peer training, mutual support celebration of successes and comfort when there is loss. Vikki: PH is a relatively rare disorder, so how are you able to raise awareness and funds for a small population? What are your primary fundraising efforts, and to what areas are most of your funds disbursed? Rino: An important part of an active community is active fundraising. Our members own PHA, so they understand the importance of keeping this organization strong. An example of that is the more than 60 member-organized special events that take place each year that support PHA research and patient programs. We are also blessed with strong individual giving from our members and friends.
PATIENT ADVOCATE NEWS
Advertising in our medical journal brings in support for our medical programs. Government support, which was never a large part of our budget, has completely disappeared during the past couple of years. In fact, PHA provides over $300,000 per year to help fund supplemental support for critically important NIH research on pulmonary hypertension. With nine products in the field, the 13 member companies of PHA’s Corporate Committee have taken on an important funding role as corporate citizens. As we receive industry funding, PHA has developed a strong mechanism to ensure that all decision making within our organization is made by our patient, caregiver and medical leadership. In recent years, industry’s ability to fulfill their funding obligation has become more complex, causing us to have to expend more staff time on regulatory requirements and to feel rising concerns for the future. Unlike diabetes, a disease that can reach more than 24 million patients and their families for support, PHA is a small disease with 20,000-30,000 patients. Yet our costs to “fix this disease” are no less. If we are to be successful, we need to look to all available sources of funding. Vikki: Finally, what advice do you have for our readers who have PH, or who have patients or loved ones with PH, who can’t afford their care, including their medications? Rino: Have hope. PH was a disease with no treatments fifteen years ago. We now have a structure that is fighting back in ways once thought to be unimaginable for a disease of this size. PH is still a very difficult disease but—together—we can, and will, change its history.
News & Updates Did you know we offer FREE webinars? During a NeedyMeds webinar, you will learn how to navigate the NeedyMeds website most efficiently to help yourself and others. You will be presented with an overview of the many different resources available on our website. Some of this information can get overlooked, so we will go over each section of the website to teach you when it makes most sense to use each one. The next NeedyMeds webinars are: Thursday, December 8, 2011 @ 10 a.m. (ET) Monday, December 19, 2011 @ 3 p.m. (ET) Click on the date you’d like to attend to register online or visit www.needymeds.org. Can’t attend either of those dates? We can tailor a webinar for your organization at your convenience. Email Elizabeth@needymeds.org for more information.
NeedyMeds in the News NeedyMeds continues to be in the news. Here are a few recent mentions: Neurology Now http://bit.ly/rh7Lfl KWY-Philadelphia http://cbsloc.al/v6c8vm
Upcoming Conferences NeedyMeds is chairing an Advocates Track at the 13th Annual Patient Assistance and Access Programs hosted by CBI. This conference, widely known and attended by the PAP and advocate community, will be held in Baltimore, MD on March 6-7, 2012. NeedyMeds staff members will be moderating many of the sessions and a variety of panelists will be present to discuss issues and topics relevant to advocates such as:
Pharma’s View and Goals of PAPs Safety-Net Resources for your Patients Cost-Effective Tools and Technology that can Streamline Operations Navigating Patients through Changing Insurance and Enrolling in Financial Support Programs Evolving-Emerging Professional Field for Patient Advocates Improving Medication Philanthropy and Health Coverage
If you are interested in attending the conference, the full agenda and registration details can be found on the link: http://www.cbinet.com/conference/pc12127. NeedyMeds may be able to provide some financial assistance for those who need it, so please contact email@example.com for more information.
Just facts PATIENT ADVOCATE NEWS
1. NeedyMeds offers more than 790 drug coupons for 737 medications.
2. There are more than 4,229 drugs and dosages on our Brand Name Drug list.
3. We have more than 295 PAP applications available for download on our site. Page 4
Drug Discount Card Print, Clip and Save:
With the free NeedyMeds Drug Discount Card you can save up to 80% off the price of your prescription medications. The card may be used by those without insurance and by those who decide not to use their insurance—for example if the drug is not covered under their plan, the copay or deductible is high, the cap has been reached, or if they are in the donut hole. Our NeedyMeds Drug Discount Card is accepted at over 61,000 pharmacies, including major chains such as Walmart, CVS, Walgreens, Rite Aid and at regional chains and local stores. There are no income, insurance or residency requirements, and no fees or registration process needed to use the card. One card can be shared with friends and family members, or they can print their own. The card can also be used for over-the-counter medications and medical supplies if written on a prescription blank, and pet prescription medicines bought at a pharmacy. The card is active immediately and never expires. Every time the card is used, NeedyMeds receives a small amount to keep our website up to date and growing.
Pet Prescriptions Did you know that you could use the NeedyMeds Drug Discount Card to save money on your pet prescriptions? Many of the medications your pet takes are the same ones that you can buy at your local pharmacy. Simply have your veterinarian write out the prescription and bring it to the pharmacy to pick up your pet’s medication. It’s that easy!
PATIENT ADVOCATE NEWS
Meet Our... Rich Sagall, MD NeedyMeds’ Co-Founder and President Vikki: Hi boss. There have been many changes since 2005, when I first started working for NeedyMeds. Remind our readers of our history and mission. Rich: I started NeedyMeds in 1997 with Libby Overly, a medical social worker. I was still practicing medicine and had a busy family medicine practice. I had just learned how to design and code websites and Libby told me about patient assistance programs (PAPs). I thought this information would make a good website, one thing led to another and NeedyMeds was born. Our mission has remained the same from the beginning: to provide up-to-date information on programs that help people with the costs of medications and health care. All our information is easy to access and use, and is totally anonymous. Vikki: How have we grown over the years? Rich: When Libby and I started NeedyMeds we were unable to think of any information for the website other than the PAPs. Then we added our disease-based assistance database and thought we were done. Next came the state programs, SHIP sites and application assistance information. Just when we thought we were done we decided to add the free/low-cost/sliding-scale clinics followed and then the drug coupons. The latest database is the camps and scholarships based on diagnosis. I hesitate to say we are done because every time I do we come up with more resource help. Vikki: We don’t provide patient advocacy, but we do have a free drug discount card that is a direct way to help individuals and organizations. How did you decide we should offer this card, how exactly does it work and how successful has it been since its initiation in April 2009? Rich: It took us a while to decide to offer and card and even longer to find the right partner. We work with a company called Argus Health Systems. They have set up a great program with over 61,000 participating pharmacies. Because of how we keep our costs down we offer a great discount to card users. The card is very successful. Since its inception we have saved users over $11 million. In October 2011, our best month, we saved users over $975,000. Our goal is to put a card into the hands of everyone! Vikki: NeedyMeds is known in the patient advocacy world for a few things, namely our PAP resource information, our medication coupons and now our drug discount card. But we also have disease resource pages, this advocate newsletter and other database information. What’s the best way to get the word out about these lesser-known resources?
Continued on next page PATIENT ADVOCATE NEWS
…Rich Sagall continued Rich: You have hit upon our biggest problem—getting the word out about what we do and all the information on our website. Most people know us for our PAP data. However, our other databases contain many great sources of help. We are working on ways to help direct people to the lesser-used sections of the website. I encourage everyone who comes to website to check them out… and then help to spread the word about all the information! Vikki: You’ve been running NeedyMeds for a long time. What have been some of the most frustrating, and rewarding, experiences you’ve had? Rich: We just discussed the most frustrating thing—getting the word out. At two recent conferences, attendees either loved NeedyMeds or had never heard of us. We need to figure out how to reach those who don’t know we exist. The most rewarding part of the job is the letters and emails we receive from people who have benefited from our information. Most workdays our website has over 15,000 visitors. Even if only a small number of them find assistance, I know we are still helping many people who otherwise might have had to forgo their medicine. Vikki: Some of our website users and our readers may wonder how we operate and where we get our funding from, basically how we manage to stay in business. How do you answer that? Rich: We don’t charge anyone who comes to the website nor do we do much fundraising. We do get a few donations, but not many. We have been awarded a few grants and we get support from a few pharma companies. We also accept a few carefully selected ads on the website. We earn a small amount from each drug discount card transaction that helps us buy more cards to distribute. Our software, PAPTracker, also generates some income. We also license the use of our information and consult with some pharmaceutical companies on PAPs. Vikki: How would you describe the NM culture, and how do you see the organization evolving over the next decade? Rich: Our emphasis is on helping people. I want that to permeate our entire workplace and culture. I want anyone who comes to the office to leave with the impression that it’s a good place to work where everyone is treated with respect and their work is valued. As for the future, I am not sure what will happen. We are not planning any changes until the future of health care is clearer. Depending on what the politicians decide, we could be more important than we are now—or we could become superfluous. Right now we are expanding our educational efforts. We are working to spread the word about NeedyMeds and all the information we have. We are also setting up community-wide programs to increase PAP applications and distribute our drug discount card. We look forward to expanding our relationship with everyone who uses our website. We have received many helpful suggestions that led to improvements. Thanks for the opportunity to discuss NeedyMeds. PATIENT ADVOCATE NEWS
PAPTracker PAPTracker is HIPAA-compliant, web-based software that streamlines and simplifies the management of patient assistance programs. PAPTracker is ideal for clinics, community health centers, hospitals and other groups that serve clients/patients that need access to prescription medications but cannot afford them. PAPTracker eliminates handwritten applications and repetitive entry of client and doctor information. It populates manufacturers' applications using stored patient and prescriber information and automatically creates refill reminders. PAPTracker always uses the most current information contained in our NeedyMeds PAP database. PAPTracker also provides over 75 patient, activity and demographic reports. NeedyMeds has limited grant funds available to help qualified small clinics ready to move from paper applications to this software solution. More information is on the NeedyMeds website and here: http:// www.needymeds.org/indices/paprxtracker.htm.
Tracker Tips & Updates PAPTracker not running as smoothly as it should? These suggestions will resolve the most common problems. 1. Operating system: PAPTracker is designed for Windows XP, Vista or Windows 7. If you are a Mac user you’ll need an Intel Mac and emulator software to run Windows. 2. Browser: PAPTracker is formatted for use with Internet Explorer (IE). Web pages will not display properly in Firefox, Chrome, Opera, Safari or other browsers. Are you viewing black pages with blue text? 3. Spyware and Virus Scanners: You should, at a minimum, have a virus scanner and an Internet “firewall” installed and up to date. We highly recommend a separate “spyware/adware” scanning product such as Spy Sweeper from Webroot.com. Slow performance and unexplained errors are frequently caused by hidden advertising software and can be repaired and prevented by Spy Sweeper. 4. Save Button: We don’t know what data you’ve entered until you click a button, for example <Save>, <Finished> or <Print>. If you leave the screen before saving, the data you have entered or changed will probably be lost. 5. If forms and reports don’t appear, your pop-up blocker is usually the culprit. You can allow pop-ups from websites that you specify by configuring your pop-up blocker (Tools menu > Pop-up Blockers) to allow our website. 6. Compatibility View: Can’t sort columns or save “Rights”? Be sure “Compatibility View” is active. You will find the “Compatibility View” icon in the “Tools” drop down menu or on the menu bar. 7. Browser Add-Ons: Many of us have browser add-ons running in the background. Occasionally, these can slow up the works. Use the Tools menu to manage add-ons and to turn off all but the most essential items. The only one that we require is Acrobat Reader. 8. Navigation: Use the drop-down menu and clickable buttons and icons instead of your browser’s Forward or Back arrows. The Forward or Back arrows make it faster to read text, but were not designed for entering data. PATIENT ADVOCATE NEWS
MEET OUR STAFF RICHARD SAGALL, MD President firstname.lastname@example.org
Adagen PAP has a new referral form, has changed its application form and program notes.
ALANNA FLANAGAN Call Center Assistant Supervisor email@example.com
PEGGY PEPLER Call Center Representative firstname.lastname@example.org
BILL KYROUZ Research Associate email@example.com
ROBERTA DOWNEY Software Sales Manager firstname.lastname@example.org
CYNTHIA FOOTE Call Center Supervisor email@example.com
ROBIN HOFFMAN Database & Research Manager firstname.lastname@example.org
Xubex PAP has added many drugs to the program.
DAMARIS MERCEDES Bilingual Helpline Representative email@example.com
RUTH ROWE Call Center Representative firstname.lastname@example.org
Gilead Advancing Access has an updated application and now covers
ELIZABETH MESSENGER Outreach & Education Manager email@example.com
SAMUEL RULON-MILLER Research Associate firstname.lastname@example.org
JAYE VAN DUSSEN Vice President email@example.com
TONYA WHITE Research Associate firstname.lastname@example.org
JULIE KAUTZ MILLS Director of Outreach email@example.com
VIKKI SLOVITER PAN Editor firstname.lastname@example.org
The WinRho PAP has been reactivated. Patient Access Network Foundation has updated its medication list. MS Lifelines for Insured Patients with no Rx Coverage is a new program.
Complera Tablets. Co-Pay Card Program for Pegasys and Copegus is a new program.
The following programs have updated their applications/forms:
KAREN GRENHAM Call Center Assistant email@example.com
Safety Net Foundation
Thyrogen PAP Takeda PAP (Spanish application available) Sigma-Tau PAP and Reimbursement Services Sunovion Support PAP
EMAIL US firstname.lastname@example.org
FAX US 206-260-8850
CALL US 978-281-6666
WRITE US PO Box 219 Gloucester, MA 01931
PatientOne Oncology EUSA Pharma Community Access Patient Program
PATIENT ADVOCATE NEWS
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.