TITLE:  PAN / Vasculitis Chat

DATE:  November 4, 2007

Participants:

Ed:  PSN Moderator

Dr. Richard Sagall: Guest lecturer; President of Needy Meds

Dr. Eric Hoy: PAN advisor

Mary: RN  & PAN volunteer

Mark: PAN patient

 

Key topics discussed: Q&A with Dr. Sagall regarding the program, Needy Meds.

Ed Moderator: We'll start in a bit; right now everyone is a bit late. Is this your first such chat?

Dr. Richard Sagall: I have done chats in the past, just not recently.

Ed Moderator: What I'll do is start with a five or ten minute chat with just you and I. I ask folks to hold questions at first, and then I'll open up to questions.  I have folk's type a! Which indicates a question then I call on them. Also, we type a # at the end of our sentence to indicate we're done with our thought and the next person can go#

Dr. Richard Sagall: Sounds fine.

Ed Moderator: I have read up a bit on Needy Meds and some of the questions I'll ask will be ones found on the site. I did pass around info from your site ahead of time so folks have study material.

Hi Dr. Eric.

Dr. Eric: Hello, everyone!

Ed Moderator: We'll start in a few minutes; the time change has probably thrown some folks.

Dr. Sagall, we find short answers work best and you can type a ...to show you are continuing. Dr. Sagall, we do a cleaned up readable version of the script and distribute to the others in the group. No worries, we toss out grammar and everything which all gets fixed in the end.

Ed Moderator: Hi Mark, where are you from?

Mark: I m from Kentucky.

Ed Moderator: You were here a few weeks ago, Mark?

Mark: That's right!

Ed Moderator: I think we all mostly know each other, but let's do an introduction for Dr.Sagal.  Just jump in; I'm Ed, Director of the PAN Network.  I m not a patient.

Mark: I'm Mark from Kentucky, an undiagnosed patient, but with something autoimmune.

Mary: Mary from Cranberry, RN & PAN volunteer.

Ed Moderator: Okay, some quick housekeeping notes; for the first few minutes I'll chat one-on-one with Dr. Sagall. Then open to questions. To ask a question type a! I'll call on you and type a # when you're done typing

Dr. Sagall, I've shared some background on Needy Meds with my group, but we'll go over some of the questions again. First, tell us a bit about your background in medicine and how you came to create Needy Meds#

Dr. Sagall: I am a Family Physician. I practiced in Bangor, ME, for nearly 20 years.

Then my wife and I moved to Philadelphia for 9 years. There I did occupational medicine.

I started Needy Meds with a medical social worker 10 years ago. Currently I work on Needy Meds and publish a children's health newsletter. We live in Gloucester, MA.#

Ed Moderator: Why did you start? You saw a need to help patients who couldn't afford meds?#

Dr. Sagall: I was aware of my patient's needs, but I had not heard of PAP's (Patient Assistance Programs). At the time I had just learned how to create web pages. Spreading this information seemed like a good thing to do so we started Needy Meds#.

Ed Moderator: So the idea was to create a web resource, a central resource listing of various PAPs for patients

You mentioned that doctors are not the ones to ask about PAP's.  Why is this?#

Dr. Sagall: Doctors don't know much about PAP's. One study showed that few doctors ever ask their patients if they can afford their medications.#

Ed Moderator: Explain a bit about PAP's.  If the doctors don't know there are probably many patients that aren't aware either. #

Dr. Sagall: Pharmaceutical companies run PAP's. The PAP's provide medications at no or low cost.

There are no set rules or regulations concerning the programs so each company sets its own.

The programs all vary in many ways: financial requirements, documentation needed, how long a person can obtain help from the program, etc. The forms are also different from program to program.

The companies decide which drugs they will offer along with which doses, how long a drug is offered, etc.

Each year the programs give away over $6 billion worth of drugs (wholesale value).#

Ed Moderator: So there are some great PAP's and some just okay ones in terms of what they offer patients?#

Dr. Sagall: Yes. I think some programs determine their success by how much drug they give away and others by how little drug they supply. That's just my suspicion.#

Ed Moderator: Can you name a couple of good companies that are recognized for their PAP's and what makes them unique?#

Dr. Sagall: Astra Zeneca has a good program. It's easy to apply to and offers a large number of drugs. Most of the major companies have good programs. It's hard to generalize because there are so many variations in the programs. #

Ed Moderator: With PAP's is there usually an unlimited amount of medications provided or usually a set time frame? Or does it depend on company to company?#

Dr. Sagall: Again it varies from program to program. Some limit participation to a year while others don't. #

Ed Moderator: Talk about the typical drugs provided. Is availability determined by the popularity of a particular type of drug, and what about drugs for people with rare diseases such as PAN? Are both types

easily available?#

Dr. Sagall: There are no typical drugs. You can find drugs in almost every class available on PAP's. Some even offer narcotics. I don't know how much of each drug is given away as the companies don't release that info. I can tell you the top ten drugs looked for on the website - just give me a minute.#

Ed Moderator: I see, let's walk a step by step from a patient's experience.  Let's say the doctor has diagnosed PAN and begun a treatment regimen that involves cost way beyond the patient's financial means#

Dr. Sagall: Here are the top ten drugs: Plavix, Lexapro, Lipitor, Lantus U-100, Nexium, Cymbalta, Seroquel, Advair, Actos, and Toprol.#

Ed Moderator: Thanks, that would be interesting to know. So they are indeed across the board.

Where does a patient begin to help pay for a treatment plan involving high cost meds?#

Dr. Sagall: The first step is to go to the website. If the patient knows the brand name of the drug, then click on "Brand Name" on the left side of the page. For generics, click on "Generic Drugs. If the drug is on the list, then click on the drug name. That brings up the program page or pages. Read the info to determine if you qualify. If so, check and see if we have an application. If so, complete it and then take it to your doctor.

If we don't have an application, then contact the program for one. We have most applications. Some programs require a telephone intake or an original application. The patient should look for all his/her medications.

There's also a section called "Disease Assistance." In this section we have information on programs that offer

assistance based on the disease.#

Ed Moderator: In addition to the company PAP's, are there also state and federal programs that offer low/no cost meds? If so, can you be on more than one PAP's?#

Dr. Sagall: Right, we have information on many different types of help and programs such as state programs, disease-based assistance, and more. We are always looking to add more info. Some drugs are available on more than one PAP. We also list the drugs (all generics) offered by two mail order pharmacies.#

Ed Moderator: I'm guessing that much of the determination is based on your income level as to whether you qualify?#

Dr. Sagall: Right, income level and family size. Most of the companies use the federal poverty levels or a multiple of them. Some of the programs are quite generous using 300% of the FPL.#

Ed Moderator: Can you receive Medicare and still be eligible for most PAP's?#

Dr. Sagall: Depends on the PAP. Some help people on Medicare Part D, others don't. Some help only if the person has fallen into the donut hole.#

Ed Moderator: Finally talk a bit about the Helping with Paperwork program. I think that was the name. This is a service to help patients find the right PAP's? Is there a cost for this service?#

Dr. Sagall: This section lists programs that help people navigate the PAP system and complete the paperwork. Most people who can use the Internet can do it without outside help.

Ed Moderator: So, in summary, Needy Meds does not provide the meds themselves, you are just a resource showing the places to go to learn more. So, there is no cost to use Needy Meds.#

Dr. Sagall: Right, we are like the Yellow Pages. We supply information for people to use.  We don't charge anything to use our info.#

Ed Moderator: Why do pharmaceutical companies offer these services?  What benefit does it provide them?#

Dr. Sagall: The answer depends on whom you talk to. Some do it because they want to be good corporate citizens. They say they understand that some people can't afford their medications and the companies believe everyone should take their drugs. For most companies the cost of their PAP is under their marketing budget.#

Ed Moderator: Good PR for them.

Dr. Sagall: Right, not all companies have PAP's, but most do.#

Ed Moderator: So, Dr. Sagall, typically and on average how long does it take to apply, have it reviewed and finally get your meds if you qualify?#

Dr. Sagall: Generally 2-4 weeks. These programs are not for emergency medicines.#

Ed Moderator: Okay, I'm ready to open it up for questions. Remember to type a! and I ll do my best to call on you in turn.#

Dr. Eric: !#

Ed Moderator: Go ahead Dr. Eric.#

Dr. Eric: Not a question, but a comment. Dr. Sagall said that many physicians don't know if their patients can afford the meds. I've found that many physicians have no idea what the meds cost.#

Dr. Sagall: Very true. Most doctors have no idea about the cost of most of the things they order - tests, imaging studies, etc.#

Ed Moderator: We hear heartbreaking stories in our group where someone cannot afford the Prednisone, or the

Cytoxan or other drugs, so they will skip it every other day and take it less than prescribed. They simply can't afford the meds.#

Dr. Sagall: It's very important for patients to tell their doctors if they can't afford their medications and doctors should ask their patients if they could afford their medications. Unfortunately this rarely happens.#

Ed Moderator: This has to be difficult on the doctor too, they has made the diagnosis, identified the treatment plan, but if the patient isn't following as prescribed then its counter productive. In our cases I suppose a patient could make the condition worse or have a flare#

Dr. Sagall: I tell physicians that if their patients can't afford their medications, then the doctors are wasting their time seeing the patients. The doctors wonder why the patient isn't improving and it's because the medications aren't being taken.#

Ed Moderator: We have a sizeable international population. Do these Paps typically include international patients? If not, do they have access to the PAP's that we have here?#

Dr. Sagall: All the programs we list supply medications to people living in the US. Most require the applicant to be a US citizen or legal resident.#

Dr. Eric: Ed, many of the international patients are in countries where the government pays for the meds#

Mark: !

Ed Moderator: Go ahead mark.#

Mark: My Mom has been turned down before, from similar programs because she must include some CD's, she has. So she must use them for income. Any help for someone in her shoes?#

Dr. Sagall: Each program has its own requirements. If the applicant is close to the cut-offs there may be some wiggle room.

Dr. Eric: Mark, you might want to see an accountant to see if she can transfer those CDs to your control or to a trust, so they don't appear as income for her#

Mark: Ok, thanks Dr. Eric.#

Dr. Sagall: I recommend applicants call the programs in such situations. Spending down" is always a possibility.#

Ed Moderator: Can a patient get an advocate to help them use that "wiggle" room to work and mediate between the patient and the pharmaceutical companies?#

Dr. Sagall: Not really. I don't know of any advocates who can do anything more than the patient can.#

Ed Moderator: What about experimental drugs, the ones that haven't been approved by the FDA.  I'm assuming no way with those drugs?#

Dr. Sagall: Right, they are not on PAP's.#

Ed Moderator: So for the patient struggling to pay for the meds shouldn't give up or self-prescribing.

There are resources out there and you may have to apply to many to find one you that qualifies you#

Dr. Eric: But sometimes the drug companies have studies going on with experimental drugs, and they're looking for patients with diagnosis X, so they will enroll the patient in a study of the drug at no charge.

It's always worth asking!#

Dr. Sagall: The FDA has a database of drug studies. You can check their website for that info. It's also important to check all of the drugs you are taking. Even if the most expensive one isn't on a PAP, the others you are taking may be.#

Ed Moderator: Well, there's a ton more on this topic but we'll have you back another time. We really appreciate your time Dr. Sagall. I know there will be patients eager to follow your advice. As I' ve said before, we hear heart-breaking stories.

Dr. Sagall: I encourage anyone in need to check out the website and check back regularly as we are always adding new info.#

Mark: Thank you very much Dr. Sagall for all your efforts!

Dr. Sagall: My pleasure.

Ed Moderator: Well folks, take care and have a great week!


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