Interview with Dr. Rich Sagall of NeedyMeds.org

by West Conner · 1 comment

Rich Sagall, MD is a graduate of the Medical College of Ohio at Toledo.  After completing his family practice residency at the Eastern Maine Medical Center, Bangor, ME, he practiced family medicine and occupational medicine there for nearly 20 years.  During that time he began NeedyMeds.  He and his wife moved to Philadelphia where he practiced occupational medicine and ran NeedyMeds.
Rich has written articles on assistance programs and occupational medicine topics for a number of publications.

He has given presentations on patient assistance programs and occupational medicine throughout the country.  In addition to directing NeedyMeds, he runs the Pediatrics for Parents website (www.pedsforparents.com), a website on children's health, and publishes Pediatrics for Parents.  He now lives in Gloucester, MA.

In this short, 30 minute interview, you will learn:

- How and why Dr. Sagall started Needymeds.org

- The type of information available at Needymeds.org

- Why drug manufacturers have these programs

- What a patient assistance program is

- How to qualify for patient assistance programs

- How the medication gets to the patient

- How to get on to a patient assistance program

- How to gain access even if you don’t have a computer

- How to get help filling out the applications

- What to do if you are turned down by the assistance program

- How to get your doctor to help you fill out the forms

- Can you use a patient assistance program if you have Medicare Part D

- How to locate free or low cost clinics

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Transcripts...

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West Conner:  This is Dr. West Conner, founder and president of MedicineCoach.com. Being a pharmacist help provide a great life for me and my family. After practicing a short time, I realize the struggles people were having affording their medication. It was then that I began my quest to help those who were struggling in this area.

During this time, I developed several unique ways to both lower your prescription drug cost and greatly reduce the time, your precious time, that you spend actually acquiring your medication. I put these time-tested and proven ideas down in the workbook so anyone can get this information and begin to save.

Just because a doctor prescribes a medication for you, you’re not forced to take it. Most likely, there are other far less expensive medications out there that you can use and get the same result. I bring these and tons more information in the workbook: How To Save Money On Your Prescription Drugs.

During my personal coaching sessions, many clients were interested in remedies other than medication – herbal products, vitamins, and lifestyle changes can greatly reduce or eliminate your need for expensive prescription drugs. The shelves at your pharmacy or grocery store can be a minefield of one concoction after another. I, along with other researchers, sift through the confusion and bring you the real studied and science-based products that work for you.

In the MedicineCoach.com website, you’ll find articles, podcasts, special reports, and interviews – all dealing with your health, your medication, and your supplements. Keep checking back at the website for frequent updates.

This is an interview with Dr. Richard Sagall president of NeedyMeds.org. Rich is a graduate of the Medical College of Ohio at Toledo. After completing his family practice residency at the Eastern Maine Medical Center in Bangor, Maine, he practiced family medicine and occupational medicine there for nearly twenty years. During that time, he began NeedyMeds.

He and his wife moved to Philadelphia where he practiced occupational medicine and ran NeedyMeds. Rich has written articles on assistance programs and occupational medicine topics for a number of publications. He has given presentations on patient assistant programs and occupational medicine throughout the country. In addition to directing NeedyMeds, he runs the Pediatric for Patients website at www.pedsforpatients.com – a website on children’s health, and publishes Pediatric for Patients. He now lives in Gloucester, Massachusetts. You can learn more about Rich at NeedyMeds.org.

Before we learn about NeedyMeds, can you just tell me a little bit about of you and why you got in to assisting people with high medication costs?

Rich Sagall:     Sure. My background is in family medicine, and I was practicing in Bangor, Maine where I did my residency. I was practicing family medicine. Talking to a friend of mine who I had met in Bangor but she was living down in either Mississippi or Alabama. She’s a medical social worker. I thought I was pretty astute and up-to-date on how to help my patients and lots of patient information, etc. She told me about the patient assistance program, and I never heard of them. She said, after explaining them to me, she said that she put together a little database on her laptop because she would go out in to people’s homes.

At the time, I had just learned how to do websites. I’ve always been interested in computers, I just learned HTML, and I said, “This will be a good project for us to do.” So, combining her knowledge and my skills, we’ve put up NeedyMeds. That’s how it started, because we just wanted to get the information out. Since then, it’s grown quite a bit. She is no longer involved on an active, day to day basis with NeedyMeds, but we have grown quite a bit.

This last week for example, everyday of the week – every work day – we’ve got over eleven thousand unique visitors to the website. One day, over thirteen, almost fourteen thousand.

West:   Can you describe NeedyMeds and some of the information that people can get from the website?

Rich:    We started off with the pharmaceutical patient assistance programs. These are the programs run by the pharmaceutical manufacturers that give away billions of dollars of drugs every year to people that can’t afford their medications. These programs are primarily for the uninsured, or underinsured – what we often call the working poor. Many of these programs help people who may be at three hundred or even four hundred percent of the federal poverty level. We have information of over four hundred companies and programs offering over four thousand different drugs and formulations.

So, that’s what we started with. Then, we added what we call disease based assistance. These are programs that help people with specific diseases. To be listed on our website, they have to help financially one way or another. There are many what are called co-pay foundations. These are programs that help people with certain diseases that can’t afford a co-pay. So, these people have insurance, but their co-pay may be a couple of hundred dollars a month or more. So, these programs help people who can’t afford co-pays with certain diseases – not everybody.

We also added a database of state programs. There are many, many programs – some are well known, some are not very well known in every state. So, we have all of those listed.  Then, we recently added a list of free, low-cost and sliding scale clinics. We have close to thirty-three hundred on our database on the website in every state. These are clinics that will help people either at no cost, a very low rate, or on a sliding scale based upon income.

We’re adding to this every week. We’re probably adding close to a hundred every week of these types of clinics. Then the latest thing that we added is a list of discount coupons. These are coupons, usually offered by the manufacturer to give people a discount, or a rebate, or free medication as a trial of the drug. The last time I checked we had over two hundred seventy-five of those. That’s going everyday also.

West:   Why do drug manufacturers have these programs to help out patients?

Rich:    Depending upon who you ask, you’ll get different answers. Most of the companies say that they want people who can’t afford medications to get them. I think that this is a strong motivating factor. Drug companies have a reputation to maintain. Sometimes, it’s not been the most sterling of reputations. This is one way that they can help people who can’t afford their medications. I’ve also been told that they found the people who get their medications for free; many of them end up having insurance at some point and tend to stick with their medication.

So, I think that there’s always two sides to an issue, but they do have the programs, and they do help, last I heard, maybe fifteen million plus people a year get over six billion dollars worth of drugs wholesale value.

West:   Yeah. I tend to agree with you on that. When I think that the big pharma gets such a bad rap in the news, in the newspaper or whatnot that they kind of got to do something to help people and get themselves in a better light than what the news media portrays them. Similar to oil companies where they just profit, profit, profit. That’s the way people tend to see big pharma and the big drug companies. So, they can do this, they can help out some people and shed themselves in a better light than the way they’re normally seen. Also, like you said, if you get somebody on a drug for a while, and if they are responding well, and eventually do get insurance, they will continue on that same medication.

Rich:    Exactly. So, there are two sides to it, but the bottom line is they do help many millions of people who, otherwise, couldn’t afford their medications.

West:   So, can you just go over, in general, what is a Patient Assistance Program?

Rich:    Patient Assistance Program, as I mentioned, is a program that dispenses medications to people who can’t afford them. You can think of them as a pharmacy in some way because they do dispense medication. So, every program requires doctor involvement. The involvement varies from just a prescription to, some time, much more information about the patient, about the diagnosis, about the medication, etc.

So, the programs dispense the medication to people who need it. There are varying requirements. Some programs are very simple, others are very complex. All of them have some type of an application process, most have an application form, although some you call and go through a pre-screening process. Once you’re approved after submitting the application, whatever information you need from the doctor, perhaps income verification such as an income tax return, or a pay stub, or a denial letter for Medicaid, etc., then you can receive the medication anywhere from one prescription to [it's] endless.

Some of the programs will go on and on. You may have to reapply every three to six months, but they will keep people on it for as long as they can’t afford their medication. There are other requirements besides financial. Most of them have some type of residency requirement. Most of them will not help people that are not legal residents, or illegal aliens in this country. Most require that the doctor be located in this country, not in a foreign country. So, they vary. Some, as I said, are very simple. The applications are very simple; others are very complex.

Most, if not all of the programs require that the medication be used for what’s called an on-label indication – in other words, an indication for which a drug has an FDA approval. Many drugs are used for what’s called off-label purposes – purposes that have not been approved by the FDA, and yet the medications are very beneficial for that symptom or disease. Most of them require a diagnosis so it’s for on-label.

West:   When you say these programs “dispense” the medication, do they mail the medication to the individual patients, or do they give the patient a voucher to go to the pharmacy, how does that work?

Rich:    All of the above. The programs are all different. The only generalization you can make about the programs is that they’re all different in some way or another. Even two programs run by the same pharmaceutical company may have differences.

West:   For more interviews like this, visit MedicineCoach.com

Rich:    Most of the programs send the medication directly to the patient. Some send it to the physician’s office. Some will send it to a pharmacy. Some will issue a voucher. So, they go to a pharmacy of their choice and get it filled there, and then give the pharmacist the voucher. So, it varies from program to program.

West:   So, step one to get on a Patient Assistance Program – once the patient goes to NeedyMeds.com, how do they go from there to get on a patient assistance program?

Rich:    Part of the initial concept of NeedyMeds was to make it simple. So, to find the information one needs to get on a program there’s generally three or four clicks of the mouse. Just a couple of other of our basic concepts, before you to get in to the process we wanted it all to be free. So, we do not charge anything for access or use of our information and our information is updated regularly – almost daily – we’re making changes to the website. It’s confidential. We do not ask any information about the applicants – the people who come to the website.

So, now going back to the process, somebody is on a drug. They go to the website, on the left there’s a list of links. You see the brand name of the drug, and then click on the brand name list. If they know the generic, they click on the generic name list. Either brings up a list of drugs. It starts with the As. That’s what we call an Alphaby – A-B-C-D, etc. You click on the first letter of the drug, and that brings you to that section of the alphabet for the drugs. Some of them are broken up because the lists are too long. You find your drug. If it’s on the list, you click on the drug name, and that brings up the program page or program pages. There you have all the information you need to decide if you’re eligible for the program, how to apply.

We have PDFs for most of the applications. It’s the type of PDF that you can type right in and fill it out, then print out a completed application. So, you’ll look at the eligibility guidelines and notes to see if you qualify. If you do, then you complete the application. Then, you need to submit it to the drug company along with any supporting signatures such as the patient’s, or the doctor’s, or any supporting documentation that you’re required.

If it’s accepted the drugs are normally sent, as I said, most often to the patient’s home, but sometimes to the other places generally within three to four weeks. So, this is not a program for people that need drugs immediately. So, if someone needs an antibiotic, for example, immediately – this is not the program. These programs don’t work that fast. So, that’s the basic process. On the program page, we do list the refill process so you know how you apply for refills.

In addition to the PAPs, we list information on two, reliable, large, nationally certified, discount mail-order pharmacies because they offer a wide number of generics at a very low cost. We also list some programs that are more of a discount card, such as Together RX Access and a few others which have a discount. You don’t get it for free, but if you qualify, you can get a ten to fifteen percent discount on the medication that you need to get.

We list them in order of what we consider most beneficial. In other words, PAPs come first, then the discount pharmacies, then the discount cards.

West:   Yeah. Someone with a lower income level that would qualify for these assistance programs may not have a computer, but they can always go to the library – which is free for anyone – and sign up there right at the library.

Rich:    Right. We find… Although we don’t accept phone calls because we’re not set up to handle it, we do get some calls. We find that the vast majority – over ninety-percent of people that call – either have a computer at home, at work, they go to the library, a senior citizen center, or they have a friend or family member that can help them. The reason it’s on the web and not in a book is that it’s changing all the time. Between all of our programs, we’re probably making ten to fifteen changes everyday – in the drugs that are available, the program requirements, the applications, we load up new programs, or programs that are not taking new applicants, state programs, disease-based assistance, etc. So, it’s always changing.

So, anyone who try to publish a book… And we used to publish a manual. By the time it’s sent out, it’s out of date.

West:   Yes, I learned that.  When I was researching my book, if this information was available to me, it would have saved me months of work. I mean, I went to each and every manufacturer’s website and tried to find the Patients Assistance Programs. NeedyMeds probably was out there, I just didn’t know about it, and you’ve got it all in one place. So, how did you get all this information in one place, or where do you collaborate all this information?

Rich:    We have three employees who’s primary job is keeping the information current. So, depending upon the type, for example, the Patient Assistance Programs, we have a system set up so that we contact many of the programs on a regular basis depending on how active they are. Some of them it’s once a month or even more frequently. Others it’s very infrequently because either they don’t have a program, and they’re never going to have one, or they have one drug and it just doesn’t change.

We have many programs that just contact us whenever there’s a change because they know that we’re the most reliable source. We found that many of the companies… We have the experience where we’ll call the pharmaceutical company and say we just want to check on your PAP. Then, she’ll just look at NeedyMeds, they have all the information. We do it that way. We also have a system for some of our other databases where we send out letters or e-mails so that the organizations like the disease-based assistance and the free clinics, for example, will be able to go and actually make changes in the listing we have for them.

It’s a real task. We’re updating everything. We have our set schedule. For example, with the state programs, every six months we check every program on a rotation just to make sure what we have is accurate. Another way that we keep things accurate is through the help of our users. We know that there’s no way we can keep everything current ourselves. We could talk to a company this week, have it scheduled to talk in two months because things never change, and then in two weeks they change something. Our users will find that and let us know. So, it’s really a cooperative effort. We’re not foolish enough to think that we can keep everything current ourselves. It depends upon our users also, and they help us quite a bit.

West:   Some of these forms can be pretty daunting specially someone who has English as a second language. Is there a place that people can go that have help filling out these forms or a program that will help them fill out the complex forms?

Rich:    There are a couple of different ways. We’re not, again, set up to do that because we just don’t have the funding for the staffing.  We’d love to be, so if any of your listeners are feeling magnanimous, just go to NeedyMeds.org and make a big donation. We do have a list of what we call Application Assistance Programs. These are programs throughout the country that help people fill out the applications. To be included in our list, you either have to do it in no charge, or a very, very low charge and you have to be flexible in your charging, otherwise, we don’t put you on our list. So, there are those programs.

As you said, some applications are very simple, others are very daunting. There are companies out there that charge for this, and I look at them with mixed feelings. There are some that charge a reasonable amount – maybe a twenty-five dollar registration fee and five or ten dollars per application. Although, nobody has to use one, some people just do because they find it easier.

Then, there are companies that are rip-offs where they charge hundreds of dollars guaranteed to get you all their medications, and often do nothing. We’ve had people e-mail, or write, or call with these very sad stories of how much money they’ve lost because these companies never live up to their reputation. So, I’d be very careful in terms of paying for this service. If you can do it yourself, that’s what I recommend. If you’re going to go with any company make sure and check with the Better Business Bureau, perhaps the State Attorney General’s office, because a number of them have been sued by the Attorney General just because they have been ripping-off and making false promises.

West:   So, let’s say you’ve gone the route, you filled out the paperwork, and you’ve submitted it, then you’ve been turned down by the assistance program. Is there a place to go to plead your case?

Rich:    Each program has its own appeals process. You want to try to find out why you’ve been turned down. It goes, partially, back to the philosophy of the program. Some programs, although none will admit this, measure their success by how much drugs they give away. The more they give away, the better their program is and more successful it is up to whatever limits they set. Other programs I’m sure, although none will admit this, measure their success by how little drugs they give away. They want to have a program, but they really don’t want to give it away.

So, if your application gets denied, you want to find out why. Sometimes it’s something simple – about a piece of information, you didn’t sign it. Those are the two biggies right there. You may not qualify, but you may be very close. It’s very important for anyone who doesn’t think they qualify but are close to contact the PAP and plead your case. Some of them do have leeway. It depends upon what the issue is. If they say you have to be a two hundred and fifty percent or less of the federal poverty level – and we have that information on the website – and you’re in two hundred and sixty, they have some leeway. If you’re using the medicine for a non or an off-label purpose, most of the time they don’t have any leeway.

So, it depends but it never hurts to call, and just like with any helpline or service line that you call, if you don’t like the answer you get from the first person, you may want to try calling again and get somebody different. In a small program, it may only be one or two people; in a big program they may have ten or twenty advisers. So, you may want to talk to them and see if a different adviser can do a little bit more.

West:   You mentioned poverty level a couple of times. Right now, at the beginning of 2009, what is the poverty level?

Rich:    It depends on a number of factors – including family size, and also where you live. Now, as of today, I don’t have the 2009 poverty levels out there. I don’t know if they’ve been released yet, but for 2008, for a single person living in the United States - for the forty-eight contiguous states in DC, its ten thousand four hundred dollars. For Alaska, it’s thirteen thousand. For Hawaii, it’s eleven thousand nine hundred sixty. As the family size increases, obviously, the federal poverty level increases.

Now, we also have in the website the percentages. So, then if for example a family of four and it was three hundred percent of the federal poverty level, that’s sixty-three thousand six hundred dollars last year. We have it a little higher this year. It’s not wealthy, but it’s not a bad income. So, that’s why I always encourage people to check, because you never know what a program is going to have as their requirements.

I also recommend, while we’re talking about that, is be sure and check every drug you’re on.

West:   For more interviews like this, visit MedicineCoach.com.

Rich:    Many people only go and look for the expensive one and forget, maybe, the five other inexpensive ones they’re taking. Yet, they may all be programs or available through a generic pharmacy much cheaper – freeing up enough cash to hopefully be able to afford the expensive one.

Another thing to do is be sure and check the medications for everybody in the household. You may be looking at your child’s ADHD medicine and forgetting about your diabetes, and hypertension, and hypercholesterol medicines; where if you can get those for free, then you might be able to afford something else that is not on program.

West:   Some of these programs require doctor participation and have a doctor’s office fill out certain parts of the forms. Now, you’re a doctor and I’m a pharmacist, so we both know the time constraints that we deal with on the job. Doctors are most likely not going to fill out all these paperwork for the patient. So, what can a person do if that’s the case?

Rich:    A couple of suggestions: one is read the form carefully and completes everything possible that you can. Leave as little for the physician to do as you can. Number two, is to get those little sticky flags and flag exactly where the doctor needs to do something. Number three is including a self-addressed stamped envelope for the physician to send the application back to you. The reason I say that, is that you want to know that the physician did it. This way, the physician sends it to you, and then you send it to the pharmaceutical program. It cuts out any of this… You know, saying the doctor didn’t do it. You know if the doctor did it. I also suggest you keep copies of whatever you submit.

There was one study that looked at the cost to the physician’s office to completing an application – and this was minimal physician involvement. It was mostly a medical assistant doing all the work. It was twenty-five dollars per application. Now, some physician will charge a small amount for this, others don’t. If you can’t afford your medicines, I feel strongly that you need to be upfront with the doctor and say, “Look, I can’t afford this. Will you help me with the PAP? Will you prescribe something cheaper? Is there something else that we can do?”

There have been studies that show that a low percentage of patients bring this up to the doctor. This is why there’s many treatment failures, because the doctor thinks the patient is taking the medication and the patient doesn’t tell the doctor that they did not.

West:   That’s true. That’s something that I try and educate my clients too; it’s to learn about your disease state. Learn about the medications. So, that if you are taking an expensive drug and there’s a generic substitution available, you can go in to the doctor’s and say, “Hey, Doc, this is costing me an arm and leg. Is it possible that we can try this other medication that’s available in generic and see how I do after a couple of months?” If you can speak intelligently to your doctor about your disease state and your medication, the doctor’s more apt to listen to you rather than you just complaining about the cost.

Rich:    That’s true. One of the things that we’re going to be putting on the website – we haven’t told anybody yet, so this is a first – is we’re going to be setting up a system so you can look up a drug and if it’s not on the PAP, you’ll be able to generate a list that you can take to your doctor of drugs in the same family that are on a PAP so you can discuss that with the doctor. So, if for example the doctor prescribed a non-steroidal anti-inflammatory for your arthritis, and it was not on the PAP, you could generate a list of all the non-steroidal anti-inflammatory that are on the PAP, send that or take it to your doctor and say, “Look, these are drugs or programs that I’ve qualified for. Can I try one of these instead?”

West:   Yeah. I’ve got a similar chart to that in the back of the back. I always use Lipitor as the example because Lipitor is not available in generic right now. So, if someone’s taking Lipitor – it’s the most popular drug in the world, it’s so expensive – well heck, there’s a number of generic medications that are statins like Zocor or simvastatin which is on a number of big box stores four-dollar generic list. So, they’re cheap. So, instead of spending a hundred fifty dollars a month on Lipitor, it’s four dollars; but if you don’t know that, you don’t know to ask that.

Rich:    That’s right. Even if your doctor prefers Lipitor, you’re better off taking the Zocor than taking nothing. That’s often the choice you have.

West:   Now, do these Patient Assistance Programs also work with someone who’s currently on the Medicare Part D program?

Rich:    It varies depending on the program. Some of them say if you have any insurance that provides pharmaceutical coverage, we won’t help you. Others say, if you’re eligible for Medicare Part D you have to apply. Then, if it’s not covered we’ll help you. Others say when you’re in the donut hole, we’ll help you, etc.

If you’re in the donut hole and you get medications through a PAP, the value of those drugs does not help you get out of the donut hole because you did not pay for them. It’s not a true out-of-pocket expense.

West:   I wrote an article about the power of coupons for prescription drugs because it’s something that people don’t think about. You don’t need to be at a certain income level, or live in a certain state, nothing. Anyone can use them. You just print out the coupon or fill out a form and you can save hundreds of dollars. So, NeedyMeds has them all in one place. It’s great, a big time saver. I didn’t know it was there. I think you need to spread the word around more about using coupons.

Rich:    We’re trying to because, as you said, it is an important thing. Many people who don’t qualify for any PAPs still could take advantage of it – for example, my wife. The co-pay of one of her medications is a coupon. We offer two different ways to use your coupons. With some of the programs – it depends. On all of them we have a link where you can print out the coupon and take it to the pharmacy. Then, we also work with one mail-order pharmacy where you can fill out all the information online and they’ll take care of everything for you. So, you can do it either way. We’re always looking for more coupons. So, if any of your listeners who go to the website know of any, there’s a link there so you can e-mail us information.

One of the reasons that we added this list is we couldn’t find a good, single listing of all the coupons. It’s the same reason we had for the free clinics. If we could find a list of all the free clinics, we wouldn’t have done it, but we couldn’t find any single, comprehensive, national list of all the free clinics. So, we added it. We’re always looking for information to add. So, if any of your listeners have any other suggestions as to types of information we could put up there, we want to know about it.

When we started NeedyMeds, Libby and I, the social worker that helped me set it up, we came up with the PAPs and then we couldn’t think of anything else to add. We really had to wrack our brain, and it’s grown since then, but it took a while for these other sources of help. We want to be the one-stop place to go when you need help with the cost of medication or healthcare.

West:   With the Patient Assistance Programs, do any of them limit you to which pharmacy you can use?

Rich:    It depends on the program. Most of them send the medications to the patient or the physician. So, it’s not an issue. Usually they don’t. If they send you a voucher, you can take it to any pharmacy.

West:   Is there a way to search for the free or low-cost clinic by your zip code?

Rich:    We do not have it set up specifically by zip code. What we have is it’s set up by state. There’s a map and you click on your state. Then it lists all the programs by city. That does raise an interesting opportunity that we have which is we don’t have a system to do it within a certain range of zip, but we could easily switch it so that you can hit a button which sort them by zip code. That might be a useful feature.

We do have on there that when you click on a clinic, you can click on a Google Map, and it’ll bring up a map of where the clinic is located so you get an idea. You can also click on a number of clinics. Let’s suppose you live in Boston and you wanted to print out a list of five Boston clinics, you can check off a box, you hit print. It’ll print out those clinics.

We like to think of NeedyMeds as being similar to the Yellow Pages. We give people the information, and then they have to use it. So, if you’re looking up a plumber in the Yellow Pages, you might see half a dozen plumbers listed. You have to pick one and make a call. We give you the information about the programs then you’ll have to use it. We want to teach people how to use the programs so they can do it themselves – how to use our information. We even told many, many times our information is very easy to use, very easy to access and that’s what we want. We want it to be so people can come, find want they need, print it out and use the information.

I think that we’re succeeding. We’re approaching our twelfth millionth view of the homepage. As I said, we get eleven to thirteen thousand unique people to the website every workday. So, I think we’re getting the information out. We’d love to get more of it out. We’re always looking for links to be added to other people’s websites.

One new feature that we just recently started is what we’re calling Disease Resource Pages. These are special pages – we only have one up right now, but we have a couple more in the works. We’re planning to really expand this. Where somebody who has a certain disease – in this case the one that we have up is scleroderma - you go to the website or a certain webpage and there are links to information about the disease. There’s a list of all the drugs that are typically used to treat the disease that are available through Patient Assistance Program. There’s a link to the free clinics page, and there are links to the programs that help people who have scleroderma.

So, we’re trying to put everything together in one page. We’re doing this in cooperation and partnership with the Scleroderma Foundation, because we’re not in a position to vend all the information that’s available on scleroderma. That’s just not something we can do. Particularly, when we add another twenty, or fifty, or a hundred of these pages – which is what our goal is – we’re not in the position to sort out the information. So, we’re working with organizations that do that. So, hopefully we’ll have all these information or these links to information up shortly.

West:   So, you’re working with different organizations that help disease states, to help out their patients, similar to like if you were to help the American Diabetes Association. You would put links to all the diabetic medication in one certain area for diabetes.

Rich:    Right. We would have all the diabetes drugs and our PAPs one place. Then we would take from their websites. They would give us links to certain sections where people go to a lot like, “What is Diabetes?” “What’s the difference in Type-1 and Type-2 Diabetes?” “What are oral medications?” “Why would I need insulin?” Etc., etc., etc. So, they would give us those links so that people could come here who were diagnosed with diabetes, have links to all the information about diabetes. Have links to all the programs that offer medications to be used to treat diabetes. Have links to all the disease-based assistance programs that are specifically for people with diabetes – programs that may help with the cost of meters for example, that may help with artificial limbs if someone has an amputation because of diabetes, etc., etc. So, we’re trying to put it all together in one page.

West:   So, anybody who wants to get on Patient Assistance Programs, or coupons, or find out where low-cost or free clinics are in their area, how do they get to the website?

Rich:    The website is very easy. It’s www.needymeds.org. If you happen to go to com or net, you end up at the same place. So, that’s where all the information is. We like to think it’s laid out fairly simply. There are no graphics that are required to get any place. We do have a special section for first time visitors, first time users. Then, we have a commonly asked questions section which answers most of the questions that people have.

One important thing to remember is that NeedyMeds does not have a program. We have information. We’re an information source. So, you don’t apply to the NeedyMeds program, you have to apply to the individual programs that might help you.

West:   That concludes this interview with Dr. Rich Sagall from NeedyMeds.org. For more information visit NeedyMeds.org.


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kingsley mary January 31, 2015 at 6:37 PM

What we plan with thoughts and actions for our future so we can enjoy retirement/older age, right? Life can change drastically when a rare, incurable disease such as Systemic Scleroderma attacks our bodies without warning! My life started changing in Fall 07 in my hands, progressing fast to include weak/painful muscles, swelling, loss of range of motion and depression until 3/30/09 diagnosed with Systemic Diffuse Scleroderma which no one has ever heard of until diagnosed and adding insult to injury, neither have most doctors, leaving patients to fend for themselves on how to find treatment for symptoms because Scleroderma cannot be treated as yet. Most Scleroderma patients look normal in appearance but the damage is extensive on the inside of our bodies, stage 4 kidney disease, hiatal hernia, pulmonary fibrosis, aneurysm in heart, GI issues, skin changes and Raynaud’s in hands & feet are just a few of my Scleroderma challenges. I am one of the more functionable patients and grateful I have doctors who care and support from Sweetheart, family and friends. Some patients don’t have either doctors nor support and rely on facebook Scleroderma chat groups for advice, love and support from people who relate and understand what they are experiencing. My life has changed dramatically from 5 1/2 yrs ago and I am grateful for my Scleroderma journey because the more I reach out to others the more rewarding my life has become. I am a patient advocate helping to educate and promote public and medical awareness of the desperate need to recognise Scleroderma as the life threatening disease it is. Scleroderma was first documented 260 yrs. ago, now we want awareness to help alleviate the horrible suffering this disease causes physically, mentally and emotionally. Please help. EMILL:kingsleymary37@gmail.com

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