Patients

There is a dire need for individual patient advocates and patient advocate groups to assist the uninsured and underinsured manage free prescription medication applications and renewal processes. The process to receive free prescription medication via Patient Assistance Programs (PAPs) from major pharmaceutical companies is not only confusing, but it’s nearly impossible for some people to manage properly. Without assistance, many patients won’t receive their medication regularly – which could be devastating to the patient’s health and long term prognosis. Others will be forced into a financial situation where they have to give up food or other basic necessities due to the high costs of their prescription drugs. It doesn’t have to be this way.

Creating a patient advocate organization is something that any person can do to make a difference in their community. Patient advocate groups are not limited to helping patients receive free medication – in fact, there are patient advocate groups for just about every major illness and health care cause. The purpose of these groups and individuals is to give a voice to those are who suffering from illness or unable to properly care for themselves due to financial and health hardships. A patient advocate can work with health care providers on behalf of patients, or their focus can be on bringing awareness to specific illnesses.

It’s truly a selfless act to devote time and resources to helping those who are unable to help themselves. While it may seem daunting, launching a patient advocate organization can be broken down into several easy steps. Take them in order and you will soon be making a huge difference in the lives of people who are desperate for your help. Of course, as with any endeavor, it is impossible to list every possible situation that will occur and how to handle them. However, we will provide a basic roadmap for you to begin. In the end, your own creativity and heart to serve you patients will make your organization unique.

Step One: Determine the Specifics of Your Group

The American Association of Patient Advocates, the advocate group that maintains this website, is dedicated to providing patient advocates and patient advocate organizations with as many tools as possible to facilitate and streamline their operations. This includes information to help access technology to assist those who cannot afford to pay for their prescription medications, a forum for advocates to communicate and share information on how to best assist their patients, and a host free and up to date information on hundreds of patient assistance programs applications and processes. We know that by serving the patient advocate, millions of lives will be changed for the better as we begin the process together of changing the way healthcare is delivered to the uninsured in America.

When starting your patient advocate organization, it’s crucial that you identify what it is you are going to do so that you can determine exactly how you are going to do it.

There is such a need for people who assist in the application and management of receiving free medications from pharmaceutical drug companies. There are a few different ways that you can do this. You could visit the home or place where the patient is staying to help them with their applications. Or, you could have the patient visit you at a specific location (like your church or a community center), or you could even hold larger informational gatherings where you educate the caregivers and patients in a group setting.

Determining how you will serve your community is the first step in creating your patient advocate organization. One of the most common questions we get from people who want to start a patient advocate organization that assists patients in acquiring free medication is if they need to be licensed to provide this service. The answer is no, you do not. You are not receiving the medication for them (it’s sent directly to the patient or to a local pharmacy or a doctor’s office), therefore you do not need any special licensing.

How will your group be based?

You don’t have to do this alone. Reach out to groups that are already serving the uninsured and sick in your community. Churches and community outreach groups should be happy to welcome you and your services into their programs, and they can likely offer you infrastructure support to get your advocate organization off the ground. If you can partner with a non-profit, there is a chance that they can do grant writing to secure funds to maintain your advocate group.

Alternatively, you can provide support and assistance privately to patients.

Just remember, it’s okay to ask for help. Don’t be afraid to reach out to ask people to join you. You can even ask for support from local medical professionals and if they can’t volunteer directly, you can always ask them to be an advisor to you if you have questions.

Will you charge?

This may seem like an odd question, but it’s an important one. It’s vital to understand exactly why charging for your services is often a necessary part of building and maintaining a successful patient advocate organization for assistance with free medication.

One group may say that you shouldn’t charge to perform the service of helping the uninsured, indigent, and elderly to receive a continuous supply of free prescription medication via PAPs because these people are already poor, so taking money would be wrong. The harsh reality is that these people don’t have much money to live on – let alone to buy medications.

However, others are careful to point out that the health situations in the lives of many patients require that they receive their medications every month – without breaks – or they could suffer major health setbacks or even possible death. These people also cannot afford to pay the high retail prices for their drugs – so they are in a no win situation. Often their only option is through a PAP. Charging a nominal maintenance fee to cover the costs of managing the program could allow you to fully focus your attention on being sure that you are keeping these people stocked with their meds without lapsing. Without that fee, perhaps you have to work extra hours at your paying job to cover the administrative costs associated with managing PAPs for your patients, and therefore cannot be sure that you are doing the best job you can in your advocate organization.

If the choices for the uninsured patient are either paying high retail prices while occasionally getting free medication via a PAP, OR paying a nominal monthly fee in order to receive free medication consistently month to month because of the help of a patient advocate group, the choice seems pretty easy.

The most important part of this decision is that you must be sure that you can sustain your program long term with whatever free or fee-based program you choose to create. If you receive private funding or grants, you may never need to charge, but don’t rule it out if you fear that you won’t be able to keep up with the added cost of running a patient advocate organization.

Will you use software to manage your patients’ prescriptions?

The advancement of technology – and specifically, advancements in the field of healthcare - has had a tremendous impact upon our lives. For one thing, it has allowed us to reach far more people than we ever thought possible with our message. Just as it has enabled us at RxHelp360.org, it can enable your patient advocate organization be more efficient, work more effectively, and therefore reach more people than was ever thought possible.

The decision to use or not to use PAP management software is a big one if you offer your services at no cost to the recipient. The software could be your main overhead as you give your help to patients.

At RxHelp.org we strongly urge advocates to use software tailored to the needs of providing free prescription assistance. We believe that the price paid for the software far exceeds the assistance it provides. Managing PAPs is a very detail oriented and sometimes difficult process.

There are several benefits to choosing to use PAP software:

You can better manage the timing of re-applications so that your patients are not without their medications due to missing windows of refills.
You can be sure that all forms are filled out with 100% accuracy.
You can, with the right program, accurately manage your renewal and reapplications in a timely manner without guesswork
You can reach more people by being more efficient in your service than you could be on your own without a management system.
You can bring on new volunteers and have them up and running on an easy to use, centralized system with very little effort (those volunteer hours are precious – don’t waste them on endless training!).
You can do informative and accurate reporting at the touch of a button. This reporting will help in all aspects of your organization – from getting grant money to getting the press to write about you (and your compelling statistics that you provide them!)
You can save a ton of money! No matter what the cost of the software, it is cheaper than the labor that you will put into doing all the work that a good software program can do automatically. Plus by ensuring accuracy you prevent problems and a tenfold use of your time.

Do not be intimidated by the costs of software. Consider first the benefits of the software and how much time, money and energy it will save you and you will realize that it will save you tremendously.

Step 2: Get the Word Out

Now that you have the details of your organization covered, it’s time to get the word out to the people who need your help. Identify where the poor and indigent might frequent in your community. Visit free clinics and learn about their PAP management - ask them to send you any overflow. Post flyers in the poor parts of your community. Leave business cards and information at free community centers. Talk to leaders of local churches to see if they can announce your services to their members.

Believe it or not, marketing is vital to how many people you help. Part of the reason that more people aren’t getting free medication is because they don’t realize that help is out there! Pound the pavement where you are and get the word out to anyone who will listen.

Do you need a website?

While it’s true that just about any business today needs to have a website to be credible, the same doesn’t go for patient advocate groups. Actually, that’s not entirely true. The people that you help are not likely to have a computer, and are even less likely to have internet access in their home. Even at the library, they may not have a clue what to look for on the Internet – if they know how to use it at all. Putting up a website for the purpose of educating your future patients would be moot.

However, there are some important benefits to having a web presence for the patient advocate organization. First, it’s a great tool for educating the community. While your patients may not have Internet access, there’s a good chance that a family member or friend does, so having a website can be a great way to help them find you.

A website is a great way to establish credibility in your community – and more importantly, in the eyes of possible contributors. A nicely done website will give your organization a fair amount of perceived legitimacy. Use it as a tool for collecting donations by placing a donation button so that you can easily receive contributions. Keep a list on the site of past contributors – give the local businesses and people some kudos for helping out. Clearly list out ways that people can help you. Whether it is by donating time or money or goods – make it very clear that you are happy to get help!

Another benefit to having a website is that you make it easier for the media to find you and get more information about what you are doing. This may seem like an odd benefit, but media = exposure and exposure means more awareness of your cause. Make sure that it’s clear that you welcome interviews. Post any anonymous statistics you have – like how many people you have helped or how much free medication you have assisted patients to receive. If you have any photos taken from informational events you have held in your community then your website is a great place to post them. Offer them to reporters and web authors so they can add to their story about what you are doing. It’s very easy to make your website friendly to reporters and news media and it’s a great way to attract attention to your cause.

Networking

Networking can be a bit of a scary word, but it’s really not that hard. Networking simply means talking to people about what you are doing. Talk to anyone who will listen! The more people you tell, the more people you can help, and the more people will want to help you. Enthusiasm is infectious!

Call your local morning shows on your favorite radio stations. See if they can get the word out about your work. Drop flyers at local doctors’ offices and stay and talk to the receptionist for a moment – see if they have a PAP management system, and if they don’t, offer to help them set one up. Get in touch with local groups that meet regularly and ask if you can give a small talk about what you do and how people can help.

Networking requires sticking your neck out a bit, but it’s for a great cause. The harder you work at making connections, the more help you will get, and the more people you can help. It’s worth it.

Advertising

“I have to advertise?” This is a bit misleading – you won’t actually be paying for anything. There are plenty of free advertising opportunities, and plenty of other resources that will likely allow you to place ads for free given your cause. Post regularly to your local Craigslist.com message board (for free) to offer your help as well as to recruit volunteers. Ask churches in your area if they would print your information in their weekly bulletin for free. Contact the local newspapers and see if they would print some information for you. Stop into local businesses and ask if you can leave flyers with your information.

It’s quickly likely that you will find yourself overwhelmed by the response you get with a minimum effort. You can only help so many people, so make sure your marketing efforts are calculated and you are ready to go!

Step 3: Sustain your Programs with Online Tools and Resources

The Internet can and should be one of the most powerful tools that you use in your patient advocate organization. There is a wealth of information shared in message board, for example. Staying up to date on prescription assistance form changes, policy adjustments, and anything else related to this complicated process can be a daunting task. Fortunately, using tools like our free medication qualification tool, you aren’t required to manage your own records on what each drug company is requiring in their program. We encourage you to use our tools to help you reach more people.

Part of the challenge of being a patient advocate for free prescription medication is trying to find creative solutions to pressing problems that your patients face. If one program cannot provide their medication, you can try a generic form, but if that doesn’t work, you can try to appeal the decision, and if that doesn’t work, you can try to get funding to supply the medication for them, and on and on. Beyond that, they may have other health problems that they have neglected because they could not pay for care. The absolute best way to meet these challenges is by getting support from peers around the country giving the same care that you are. The Internet allows this to happen effortlessly in places like our Advocate Message Board. Simply post about your problem and others will reply with advice.

As you develop and grow your local advocate group, make sure to use the Internet to stay informed and stay connected with others doing the same work. Continuing education and support are vital to the long term success and high standard of care that your patient advocate organization provides to your community.

If you have any other questions about starting a patient advocate organization – no matter how small the question might be – please join us on our Advocate Message Board.