Covering the Cost of Pain for Rheumatoid Arthritis
It hurts. It makes work difficult. And, it’s expensive to treat. How do you pay for your rheumatoid arthritis treatment?
Join us for an enlightening discussion on the many challenges to affording the treatment that you need. Our guests will teach you about the programs offered by pharmaceutical companies, effective ways to communicate with insurance providers and how to assess whether or not the more expensive treatments can really bring you relief.
As always, our expert guests answer questions from audience.
Announcer:
Welcome to this HealthTalk show. Before we begin, we remind you that the opinions expressed on this show are solely the views of our guests. They are not necessarily the views of HealthTalk, our sponsors or any outside organization. And, as always, please consult your own physician for the medical advice most appropriate for you.
Now here’s your host, Mary White.
~Mary:
Hello and thank you for joining us for, RA: Covering the Cost of Pain. I’m your host, Mary White.
Rheumatoid arthritis patients pay for their pain in more ways than one. They may have physical limitations, medication side effects and difficulty carrying on the daily routines that others just take for granted. When insurance problems like excessive premiums, high-priced co-payments, and denied claims make life even more prohibitive, it hardly seems fair. Is there anything a patient can do? In this show our expert will teach you how to advocate for the best possible care, whether you have insurance or not, by helping you navigate the insurance system, informing you of your patient’s rights, and educating you about the alternative avenues available for medical treatment.
Joining us is David L. Knowlton. Mr. Knowlton is a member of the board of directors of HealthWell Foundation, a non-profit organization established to help individuals who can’t afford their insurance co-payments, premiums, co-insurance, or other out-of-pocket healthcare costs. He is the president of the non-profit New Jersey Health Care Quality Institute and a director of the Leapfrog Group, a Washington, D.C.-based employer member organization whose mission is to address the epidemic of medical errors in the United States. Mr. Knowlton founded and directed a healthcare payers’ coalition in New Jersey, served as deputy commissioner of the New Jersey State Department of Health and Human Services and teaches at Rutgers University. Welcome, Mr. Knowlton.
Mr. Knowlton:
Thanks for having me, Mary.
Mary:
David, you are on the board of directors of the HealthWell Foundation. Can you tell us about the foundation and how it came about?
Mr. Knowlton:
HealthWell was set up back in 2003 in response to the fact that many people who have insurance whether it’s private insurance, through their employer, or even Medicare or Medicaid, still struggle to meet their out-of-pocket cost of their healthcare. This is especially true for individuals who live with chronic conditions like rheumatoid arthritis. The mission of HealthWell, then, was to meet this need for as many uninsured patients as possible. Since 2003 HealthWell has provided financial assistance to more than 35,000 people with serious and chronic diseases, such as rheumatoid arthritis, psoriasis, lung cancer, lymphomas, asthma, etc., and people who have had organ transplants.
Mary:
And where does that funding come from?
Mr. Knowlton:
A variety of places. They accept donations from all over the place. We get a lot of support from the pharmaceutical industry, and we have individual donors who have given support. We give a lot of aid to people who need it.
Mary:
How many applications do you get each year, and how many people are you able to help?
Mr. Knowlton:
It’s really unbelievable. As I said, HealthWell has already assisted more than 35,000 patients in about four years. Right now we are getting over 3,500 applications each month, and our representatives handle about 13,000 calls each month. But both of these numbers continue rising. In 2006 we allocated more than $47 million to more than 16,000 patients, but we’re already exceeding that now this year.
Mary:
What are the most common types of cases you find yourself dealing with when it comes to insurance issues?
Mr. Knowlton:
All of the patients that HealthWell can help do have some form of insurance, so what we see is that the coverage is inadequate. It’s not enough. So sometimes people who have got high deductible plans because they never expected to get sick, then got a serious diagnosis like rheumatoid arthritis, now find themselves unable to meet the level of cost-sharing that those plans require. But often it’s people with more traditional plans who simply find that the repeated out-of-pocket expenses of a serious chronic disease are more than they can manage.
Mary:
I’ve read recently that one of the most important things consumers should know about insurance companies is their medical loss ratio. Can you explain what is a medical loss ratio, and what does it have to do with health insurance coverage and purchasing a health insurance plan?
Mr. Knowlton:
A medical loss ratio is the amount of money that insurance companies actually pay towards medical care. Actually, the medical loss ratio is sort of a misnomer. It’s really the costs that insurance companies are paying towards medical care rather than towards administration, marketing, salaries and so forth. So the higher the ratio, the more the premium dollars that are going back into providing care to the people paying the premiums. So the higher the ratio, generally, the better the company is.
Mary:
Do insurance companies have to disclose their medical loss ratio to the general public? In other words, how do you get that information?
Mr. Knowlton:
They do have to disclose it to their state government, and so the state government has it. And it could vary from state to state, but I don’t know of any state that would not disclose that. So if you called your insurance commissioner’s office, they would know the medical loss ratios of the various companies that they regulate.
Mary:
There are so many different types of insurance plans. Can you describe the most common insurance plans and then tell us what kind of coverage a patient is getting with each type of plan?
Mr. Knowlton:
The insurance plan that most people were used to many years ago was called an indemnity policy, sort of the way you think of a fire policy in your house. You get sick, it pays for the costs. But with managed care, that all changed. And I don’t know of many indemnity policies that are still around. What you see now is HMO coverage, which is health maintenance organizations, where there is usually is a capitated fee or one fee given to a primary care physician that provides all of the care for the patients in his care and then pays some money towards referral to other specialists.
Preferred provider organizations, or PPOs, are probably the most common, where there is a preferred network of providers that you can go to, and generally you don’t have much co-payment or deductible that you have to pay. But if you go outside of that network, you pay significantly more.
And then there is what is tactfully called a basic and essential plan. It is also called a catastrophic plan, which says basically it’s covering terrible things that happen to you. So if you end up in the hospital and you are having an organ transplant, it will cover that, but it doesn’t cover routine care. So you don’t get to prevent the need for the catastrophe. I don’t have a lot of confidence in catastrophic plans. Those are the basic categories. There are subsets within them, but those are the basic categories.
Mary:
Before anyone purchases insurance or gets insurance through their employer, what are some of the most important questions they ought to ask?
Mr. Knowlton:
There are two parts to that. One is if they are getting the insurance through their employer, they may not have a lot of choices. They may only be given one plan. But if they do have a choice, they should take a look at what’s covered, what’s in the list of benefits, what types of risk they have and what types of diseases they have. If they have rheumatoid arthritis, they want to see if their medications are covered. They also want to see if their physician is in the network if it’s a PPO. Can they go to their physician without a lot of out-of-pocket costs, or is it going to cost them a lot to continue with their physician?
And what if they disagree with a decision of the insurer? What’s the appeals process? What type of rights do they have under the policy? And, finally, how soon will new medications be covered? We’re evolving very rapidly in medical technology, and you want to have things covered pretty quickly. You can’t wait for a coverage decision for months if you have got a catastrophic illness.
Mary:
Employers do frequently offer health savings plans, HSAs. What are they, and how are they best used to pay for treatment?
Mr. Knowlton:
Health savings accounts are really a way insurance is used. Actually, the health savings account is created by Internal Revenue Service law. And what it allows you to do is to take a high-deductible plan, which means you are paying a lot out of pocket up front, and use that money tax-free. So you can save that money. And if you don’t use it by the end of the year, you roll it over into the next year, and you can keep it forever. The money is yours. You can even leave it to your children when you die.
But the difficulty with health savings accounts is if you are sick, you are constantly blowing through that high-deductible cost, and that can have some catastrophic consequences. Some people take a high-deductible plan, they think it’s a good way to save for a kid’s education or for retirement and then they get rheumatoid arthritis or cancer or some other problem, and suddenly they are blowing through that money very rapidly.
~Mary:
How can a regular person decipher the jargon about insurance plans so they really know what they are getting?
Mr. Knowlton:
Actually, the policies are required to provide a glossary that explains how to get access and what the various jargon means. But the Hartford Insurance Company puts out an insurance jargon translator that’s actually pretty good. If you go to The Hartford insurance company Web site (www.thehartford.com) and look up the jargon translator, it’s a pretty good translator of what everything means. That’s probably the best resource that I have seen.
Mary:
Generally, is it safe to say that the more you spend on your healthcare in premiums the better the coverage you are going to get?
Mr. Knowlton:
No. Back to your previous question on the medical loss ratio, if you are paying a thousand dollars on your premium a month, but there is a medical loss ratio of 70 percent, that means that 30 percent of the money, or $300 a month, is going for overhead. Somebody who has an 85 percent medical loss ratio is only spending $15 on overhead. The rest of it is going into premium. So the amount you are spending doesn’t matter as much as what you are getting for that, whether it covers what you need, and whether the loss ratio is reasonable.
Mary:
Suppose an RA patient let his or her insurance lapse because they changed jobs or they just couldn’t afford it. Is it possible for them to get insurance again? Would there be restrictions, and if there were, what are the steps that need to be taken?
Mr. Knowlton:
This is very state-specific. It’s governed by state laws. As a general rule, if you have a break in insurance for more than 60 days, insurance companies can exclude preexisting conditions if there are not other state laws that add control over that. But it depends on the area that you live in and what the policy says. But people who do have a preexisting condition should work hard to keep their insurance in force. That’s why there are provisions of COBRA and so forth to keep people’s insurance in force. [COBRA is a continuation of health coverage if a person loses his or her job. It stands for Consolidated Omnibus Budget Reconciliation Act, a law passed by congress in 1986.]
Mary:
David, is the message to all of the RA patients out there, if you have RA, a preexisting condition, don’t ever let your insurance lapse because you may never get it again?
Mr. Knowlton:
I think it’s never letting your insurance lapse because you are always better off with health insurance than without it. One of the ways HealthWell has assisted some eligible patients is by covering insurance premiums. Let’s say a person’s rheumatoid arthritis means that they have to stop working, but they’re eligible for COBRA coverage. HealthWell will step in and help with some of the out-of-pocket costs so they can continue to be covered as an eligible patient. It’s a creative way to keep people in coverage so that they continue to get care.
Mary:
So then, what is the difference, David, between Medicaid, Medicare and Social Security disability benefits? Who qualifies for the programs? When can they be useful to RA patients? Can you give us an example for each one?
Mr. Knowlton:
I’ll try. Medicaid is the program for the poor. It’s regulated by the states, but there is federal matching money involved. It is somewhere between 50 and 65 percent federal match. And this is set by the policies of the state. And so it’s called different names in different states. It can be called just Medicaid. Sometimes the program for kids is called SCHIP, the State Children’s Health Insurance Program.
Qualifying for Medicaid depends upon your state’s qualifications. Different states have a different percentage of people living at the federal poverty level, which makes it acceptable [or not] for you to be able to qualify for Medicaid. This also depends on whether you have children. And it’s easier for a woman than a man to get Medicaid.
Mary:
Why is that?
Mr. Knowlton:
Because Medicaid began as a program for mothers as an aid to families with dependent children. So it started as a program targeting mothers, and so it has that bias in its design. It’s not a profound difference, but it is a little bit easier.
Medicare is for people who reach the age of 65, 60 in some circumstances. It is a federal program. The standards are all federal. And everybody is entitled to it. There is no means test [a test of how much money you either have or earn] for Medicare. So you can be impoverished and be on Medicare, and you can be a multibillionaire and be on Medicare. When he gets old enough, Bill Gates will qualify for Medicare and get a Medicare card. It’s an absolute entitlement.
Social Security disability benefits are for people who cannot work because they have a medical condition that is expected to last at least one year or result in death. It’s a very strict definition of disability. Some state programs may give money to people with partial disabilities or short-term disability, but Social Security does not. It’s a very strict definition of disability. And the eligibility for it is what they call the aged, blind or disabled, and they have to have limited resources. It’s means [income or wealth] tested. It’s a very hard program to get people into. It’s very aggressively set up. One exception to that is a lot of people who end up on renal dialysis, called end-stage renal [kidney] disease, qualify for Social Security Disability. Again, it depends on whether you can get qualified or not.
Mary:
What if an RA patient is low-income, but not low enough to qualify for these government programs? What are their options?
Mr. Knowlton:
One thing is to try to get coverage through other types of programs within their state. Many states have lower insurance available to people who don’t have an employer paying for them, so they can access an individual market. Another option is in all states that I know of there are federally qualified health centers, FQHC’s, which provide care to all comers on a sliding scale. It’s means tested. And they will give people care, including care for free if people can’t get care any other way.
Also, a lot of the pharmaceutical companies provide assistance programs that provide prescription medications for free. The program in New Jersey is called Rx for New Jersey (Rx4NJ), and I assume there are similar programs in other states. And finally, most state programs have a project where they provide charity care at a hospital for people who can’t afford care.
Mary:
When we are talking about Medicare, what’s the difference between traditional Medicare and this Medicare Advantage Plan? Is one better than the other one?
Mr. Knowlton:
That’s a tricky question. What really happens is that Medicare Advantage lets beneficiaries choose to receive their Medicare benefits through a private plan rather than through Medicare’s traditional fee-for-service program. So you sign up for Aetna’s Medicare Advantage Program, or Blue Cross, or something like that. Because they are really private insurance plans, Medicare Advantage offers different benefits than traditional Medicare. For example, dental services may be rolled into an advantage plan, but it may cost a little more out of pocket for the person. Or the cost-sharing may be reduced because they may actually offer fewer benefits than traditional Medicare. So there are many different advantage plans available, and it requires a certain amount of research on the part of each individual to figure out what’s right for them.
Mary:
Can you explain COBRA and HIPAA? I mean, what are they, and how do they help RA patients?
Mr. Knowlton:
COBRA is the Consolidated Omnibus Budget Reconciliation Act. That’s what it actually stands for. That’s the name of the bill where the law was passed, and what it allows people to do is extend their benefits if they lose their employment for whatever reason. As a general rule, you can extend benefits for up to 18 months; twice the 18 months, 36 months if you lost benefits as a result of death or divorce; and up to 29 months for certain disabilities, which includes rheumatoid arthritis patients.
This means that your employer would have to allow you to buy into his or her employee-offered plan for that period of time. They would charge you a premium for that. They can charge you by law up to 118 percent of what they are paying in premiums themselves.
And back to my example about HealthWell and how they pay the premium in some cases – it’s done the same. You just lost your job, and now you go to your employer and say, “I want you to put me on COBRA, and they say, “okay, give me your check for $800 for this month’s premium.“ Then you say, “I can’t do that because I don’t have my job.“ So, HealthWell has been helpful by stepping in and trying to help some folks in those types of circumstances.
Mary:
And if you quit, does COBRA apply?
Mr. Knowlton:
Yes. And HIPAA is the Health Insurance Portability and Accountability Act. It was intended to be the fact that you could take insurance and move it anywhere. That didn’t work out that well. It has become the privacy act. It has become the law that now, every time you go to the hospital, they make extra careful that nobody knows your business.
You always see signs in the [hospital] elevator that say, “Please don’t talk about patients in the elevator.“ That refers to the HIPAA law. It has really become a privacy act much more than what it was originally intended for, which was putting together some sort of information exchange that would allow us to ensure quality in health plans and, number two, to make it portable across states. But because states regulate these plans locally, it’s very hard to guarantee that people can transport their plans across states unless they happen to be with a nationwide carrier.
Mary:
David, a lot of times people have trouble because their insurance company doesn’t cover prescription drugs fully or even at all. What can a patient do if their doctor prescribes a medication that isn’t approved? How do they get their medicine?
Mr. Knowlton:
The first thing they can do is they can talk to their doctor. Very often there are alternatives. Another thing people can do is, just as we discussed earlier, seek out assistance from the pharmaceutical company that’s selling the medication and get assistance through their patient assistance program. Finally, if it’s their insurer that isn’t covering it but they are insured, they can come to HealthWell and see if it’s a covered program under HealthWell.
Mary:
It sounds to me like part of being a self-advocate is to know how to appeal to your insurance company if your claim has been denied. So what are the dos and don’ts a patient needs to know when appealing a denied claim?
Rheumatoid Arthritis Webcast
RA: Covering the Cost of Pain
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Mr. Knowlton:
Insurance companies don’t like appeals. So one of the things that happens is a lot of these appeals are denied because you don’t follow the process. So the most important thing to know is what the actual process is. If the appeal has to be in writing, you have got to send it in writing. If it has to be by a certain deadline after the denial, you have to know what the deadline is.
It’s also important that you keep a track record or contemporaneous notes of what actually happened at each stage in the process, because the appeal can take a long time, so you need to know what happened to be able to answer questions down the road. Most states report the number of appeals that insurance companies have, and it’s helpful to know if they have an awful lot of appeals. And if you have any choice in insurance company, you might want to shy away from a company where a lot of people are complaining.
Mary:
That makes sense. And then what would be the difference between an appeal before treatment and an appeal after treatment?
~Mr. Knowlton:
An appeal before treatment is when you have to have a procedure done, and you have to get it approved ahead of time, and they deny it [called prior authorization]. Prior authorization means you go and you appeal saying the prior authorization was improperly denied.
After treatment is you receive the care, there was no requirement for prior authorization, but they denied payment because they said it was experimental treatment or some other problem like that.
Mary:
So then how can you get your doctor to help you with that kind of thing?
Mr. Knowlton:
Doctors can help by sending prescription information, medical information, and a letter explaining the need for coverage. I think doctors can be pretty decent advocates. It’s unfortunate, though, because doctors get placed into this position and it’s not really their job, but they care about their patients and want to fight for them. And they can be very helpful if they make a very good, articulate medical case for why this is needed.
Mary:
If you are really having a hard time, when is it the right time to get an attorney or an advocate?
Mr. Knowlton:
That’s a hard question to answer. Some people are more comfortable if they have an attorney guide them through the process. It can be expensive. If there is a lot of money at stake, then you definitely want an attorney to help you with the process. The bigger warning on my part, Mary, would be to get an attorney who has done these types of appeals. You need somebody who has some experience in healthcare who knows how to appeal an insurance claim.
So you need to ask around and make sure you’ve got a lawyer who knows what they are talking about. Some states have advocacy programs where people will help you in that process, and many legal services agencies have health appeal advocates that will help. So you can go to a legal services office, and they will help you.
Mary:
Sometimes we hear these horror stories about a working middle-class person with a chronic illness who loses everything due to lack of insurance or the wrong kind of coverage or maybe because healthcare is just so expensive. Are these situations just the occasional anomaly, or is this something that happens frequently? Is there a social safety net in this country?
Mr. Knowlton:
The majority of personal bankruptcies in the United States are because of health coverage costs. The Harvard study that was done about a year ago looking at personal bankruptcies found the majority of them were caused because of healthcare costs. So the frightening stories that you talk about are definitely there. They are not an occasional anomaly. They are something that happens frequently.
There is a social net in this country as we have talked about with Medicaid, with disability, but they have some pretty stern tests, and a lot of people fall between the cracks. The classic position of someone falling between the cracks is someone who didn’t have very good coverage but wasn’t sick, suddenly gets very sick and no longer has coverage. And so there is a real problem, and I think why you are hearing so many cries for reform across the country is because of that.
Mary:
If patients find themselves in a situation like that are there resources out there that can help them, and what are they?
Mr. Knowlton:
There are a lot of resources out there, but they are hard to access. Most hospitals don’t turn patients away. So those patients can go to a hospital. They can go to an emergency room. An excellent resource is the FQHC, the federally qualified health centers. Many church groups have clinics that they have set up. And there are also the pharmaceutical companies that are jumping in and helping out. And for underinsurance, which is I think a big piece of this problem, an organization like HealthWell can be very helpful for folks to get that type of coverage.
Mary:
I spoke with a patient advocate a few months ago. She works with patients who have to choose between paying their rent and paying their insurance. She said insurance advocacy and reform for the chronically ill is the most important civil rights issue of our generation. What are your feelings about that statement?
Mr. Knowlton:
I agree a hundred percent. I said just the other day to a newspaper reporter in an interview that everybody knows that the healthcare system and the way we reimburse are broken. We’ve got to get the decision-makers to understand that too.
Mary:
But how do you think that could happen?
Mr. Knowlton:
I think it’s going to require pressure from consumers. I guarantee that your people are seeing a big difference right now from five years ago in terms of when they go to the doctor how many additional bills they get coming into their mailbox for a visit that was already covered.
But this medical cost-sharing is really becoming the primary way that insurance companies are controlling their costs and holding down the cost of insurance, and people are really getting devastated by these costs. So I believe if this doesn’t change soon, we’re going to see even more bankruptcies from it.
Mary:
We have a lot of e-mail questions, so let’s get to them. One of the first questions is from Raleigh, North Carolina, and the question, David, is, “Why is it so hard to get life insurance when you have RA?“
Mr. Knowlton:
I don’t know. I assume that it’s an underwriting standard that somebody has found that having rheumatoid arthritis leads to increased claims or inability to pay. Remember, it doesn’t just have to lead to the fact that you are going to die. It could lead to your inability to pay the premium. So sometimes there are underwriting standards that would go that way. I’m not an expert in life insurance, but that would be my guess.
Mary:
So it would just mean that the insurance company thinks that you’re not a very good risk, then?
Mr. Knowlton:
It doesn’t think you’re a very good risk. It’s whether you will be able to sustain the premiums and so forth over time.
Mary:
From Portland, Oregon, we have a question. “How can I get an insurance company to cover me as a private payer with a diagnosis of RA, reasonably?“
Mr. Knowlton:
I think in terms of reasonable coverage, that’s in the eye of the beholder. What is reasonable coverage? Most companies will cover rheumatoid arthritis, but you may have to find out what the coverage benefits are? The other thing that they can do is call the plan. People never avail themselves of that opportunity of calling the plan, talking to one of the people with the plan. They assume they are going to say no. And very often the plan can be helpful to them in deciding how they can get the coverage that they need.
Mary:
Debbie from Palm City, Florida, asks the question, “What can we do about the cost of an infusion such as for Orencia (abatacept), the thousands of dollars the insurance company won’t pay?“
Mr. Knowlton:
That’s exactly the niche that HealthWell is trying to address. I don’t know whether that particular drug is one of HealthWell’s covered drugs, but if they go to our Web site (www.healthwellfoundation.org) and look it up, they would find out whether they can get assistance with that type of coverage from us.
Mary:
David from North Ridgeville, Ohio, wants to know, “How does insurance justify denying a covered medication but not at a dosage prescribed by your physician? You don’t pay insurance to treat you, only help you cover expensive medical costs. An example, a friend who was already receiving Humira (adalimumab) every two weeks was still suffering, and her rheumatologist prescribed it once a week. Her insurance denied it. Obviously she can’t afford the medication as prescribed otherwise. Does this open the insurance company up to malpractice?“
Mr. Knowlton:
No, because it’s undoubtedly going to be well covered in their benefit design. So if you read their schedule of benefits, it will be very clear what they will rest upon. You may be able to appeal it, or you may want to talk to your doctor and find out how critical it is that it be at that utilization level or that dosage. Is there another drug that might be more covered and easier to substitute? If the answer to all of it is no, you need this coverage but it’s going to be denied for that type of use, then, again, go to the HealthWell Foundation Web site (www.healthwellfoundation.org) and see if that particular drug is covered and whether you can get assistance there.
Mary:
We have a question from Waldorf, Maryland. “Isn’t Medicare supposed to be paying for RA drugs now? I am 48 and have been on disability for almost six years. The cost of my medicine is almost as much as my [monthly] Social Security check. Do you have any advice?“
Mr. Knowlton:
Medicare is supposed to be paying for some of the RA drugs, and so my advice would be similar to what we talked about earlier. I would call the carrier. I can’t tell from this question whether this question is about a Medicare Advantage Plan or not, but my guess is probably not, because it looks like they are on disability. Then they would be calling the Centers for Medicare and Medicaid Services, CMS, in Washington, and see if they can find out what it will take to get that type of coverage.
My other advice would be if the medication is still the difficulty again, check with HealthWell. Also look into the pharmaceutical assistance program in your state.
Mary:
We have another e-mail from Freeport, Illinois. The question is, “Enbrel is an excellent drug for RA, but there is no way I can afford it. I am retired and 72 years old. What can I do about this? I have had RA since I was 25, and I have suffered terribly.“
Mr. Knowlton:
I don’t understand why the Enbrel (etanercept) is not being covered; maybe this is, again, insurance provided through a Medicare Advantage program. Check with HealthWell or check with one of the patient assistance programs that the pharmaceutical companies have out to see if they can get coverage for Enbrel. They shouldn’t have to suffer for it.
Mary:
This is sort of an opposite question from Louisiana. “How do you receive financial assistance when your income is too much?“
Mr. Knowlton:
That’s a tough question, because having income that is too much does not necessarily mean that you are not in need. What you have to do is you have to look at multiple opportunities for assistance, and that may again include HealthWell. It may include patient assistance programs. It may include talking to state programs. New Jersey, for example, has a Pharmaceutical Assistance for the Aged and Disabled, PAAD, program. Many states have a similar program. A lot of people don’t know about it, and they need to check into it to see if there is a way they can get some additional assistance if they don’t qualify for some of the other programs.
Mary:
It seems to me that a lot of older people especially own real estate, which has become worth a lot of money. So on paper it looks like they are well off, but not so much.
Mr. Knowlton:
Very often, though, that’s not included. The ownership of real estate is not included in the calculation, unless they are living there alone. If they are living there alone, it might be. It depends on the state policy for something like Medicaid. But probably more helpful for your listeners is to suggest that they go to a legal services program and have them walk through what their options are.
Sometimes those options aren’t good. If your income is just a little bit too much, if the coverage in your area is up to 200 percent of poverty, and you make 201 percent, you’re on the other side of the threshold. Then you have got to be creative about how you get the help you need.
~Mary:
We have a question from Rita in Mount Sterling, Illinois. She says, “I’m on Humira (adalimumab) right now. I have a private insurance policy which pays part of it. My rheumatologist suggested this past week that I inject myself weekly instead of every two weeks as my arthritis is getting much worse. That will be a cost of $3,000 per month even if my policy will cover the extra injections. What happens when I go on Medicare in a few years and this is not covered as one of their approved drugs? I’m also told that most all Medicare D prescription plans only help with generic drugs, and as far as I know there are no generic biologics.“
Mr. Knowlton:
That’s a bunch of questions contained in that e-mail. If the doctor is saying that it’s medically necessary for them to increase or double in this case the number of injections, then the doctor needs to advocate that medical necessity to her current private insurance plan. And if it is denied, appeal it. And I am assuming, reading between the lines, that the cost of $3,000 per month even if her policy will cover the extra injections is a deductible or co-pay of some kind. Then go on the HealthWell Web site and see if it’s one of our programs. I think it is.
And about going on Medicare, it would be a problem if it’s not one of their approved drugs. I think the fear here was the fear that all prescription plans have to be generic. But there is not a requirement that you have to have generic if there is no generic equivalent for the drug you’re taking.
Mary:
We have another e-mail. This person asks, “Besides manufacturer’s Patient Assistance Programs, or PAPs, what is your awareness of any patient support programs available from biologic manufacturers?
Mr. Knowlton:
I don’t know of any. That doesn’t mean there aren’t any. It just means that I don’t know of any. I think that’s a good question, but I don’t know.
Mary:
Could that person get in touch with a company on his or her own?
Mr. Knowlton:
Absolutely. You can call the company that manufactures your drug and ask them – all of them have compassionate programs. Ask them what their policies are and how they could be helpful. People should not be afraid to call their insurer or the pharmaceutical company that makes the medication.
Mary:
We have an e-mail from Texas. The question is, “I have RA, but I also have Sjogren’s syndrome along with my RA. My rheumatologist told me of a drug that is expensive, and then he said it was the only drug that would help with the Sjogren’s syndrome, but I do not have the funds. I do have insurance, but I don’t want my rates to go up. Is there any help out there?
Mr. Knowlton:
This is a HealthWell problem. They should go to the HealthWell Web site (www.healthwellfoundation.org) and fill out the application. I guess they’re saying that their rates would go up because of the disease that they have, but it shouldn’t.
Mary:
David, I am noticing here we are getting a lot of questions about Medicare Part D. People seem to have a lot of trouble getting their medications paid for. What is it about that program that makes it so difficult?
Mr. Knowlton:
I think that there is a period of coverage before the regular coverage kicks in, called the doughnut hole, that people get difficulty getting coverage. The other problem with it is that people make a choice on which program they are going to take under Medicare Part D, and then that particular program stops covering their drugs. It’s administered locally. There is no national standard on Part D, and I think that’s probably the biggest problem.
Mary:
We have an e-mail from Burlington, Massachusetts. “Are there any clearing houses for information like this? I will be having ankle replacement surgery soon, another thing it’s hard to get info on, and have had a difficult time getting information on how to cover costs on things like scooters, handicapped transportation, stair lifts, other things that will be needed to recover from this while still being able to go to work. I don’t need ankles to work on a computer. It’s doubly hard because I am not considered officially handicapped, though I do have a handicapped parking permit. I am only 41 so don’t fit into elderly care guidelines. Being young with RA is a tricky situation.“
Mr. Knowlton:
I grew up in Massachusetts, so I feel for this gentleman’s problem. Most states, and Massachusetts is one of them, has a Department of Human Services, which will have a program for disabled individuals. Go get assistance from them. They will have a wealth of information about how to access assistance, how to get things like handicapped transportation and so forth.
There are a lot of advocacy groups for the disabled, but there are also state programs for the disabled. So you can go and get assistance from your state. And you can also get advice from them on accessing these types of things if you have a disability. I agree with them. Being young with RA is tricky.
Mary:
And do you find, David, people are scared of getting put on hold [on the phone] for five hours, and they don’t like to deal with all of that?
Mr. Knowlton:
Yeah. And the other thing, Mary, is there is a certain element of dignity. I had a patient say one time, “You have got to keep reminding yourself that you are the victim here.“ I think that’s absolutely true. It does take some tenacity. But the other thing that I find is helpful is to suggest that people work with an advocate, work with a friend. I actually work with folks in my church this way.
And so it doesn’t have to be so difficult. But in answer to that person who called from Massachusetts, I just took a quick look on my computer. The Massachusetts Office on Disability is the name of the office, and it’s at (www.mass.gov). And I am sure that there are these types of offices elsewhere in other states. There is also a Disability Law Center in Massachusetts as well. So that’s the type of thing that somebody with a computer and a few minutes can get access to pretty quickly.
Mary:
We just got an e-mail from Crystal in Georgia. She says, “I’m a caregiver for my husband who is disabled with MS. He is on Medicare and receives disability, but due to his age he is too young for Medicare supplements. I won’t qualify for disability when my time comes because I have been unemployed since 1989. I am worried that my RA may not allow me to take care of him or to go and work. We fall through the cracks of most programs. We have some IRA funds that will run out because they pay for our basic overhead, and my current insurance is over $800 a month for a PPO plan and is 20 percent after deductible. Also with Medicare Rx we have reached the doughnut hole but never to the catastrophic funds. Those plans for Rx assistance say if you’re on Medicare no help is available, and if I have some insurance coverage for Rx, nothing is available. I can go on, but I think you get the picture. What would your next step be?“
Mr. Knowlton:
My next step would be similar to what we said with the gentleman from Massachusetts. You have the classic situation of caregiver helping somebody with chronic illness and facing a chronic illness as well. Then you should try to get some assistance because you want to stay as self-supporting as you can and as self-reliant as you can.
But that is also in your state’s interest, because if you can’t, then you are going to become a requirement for them. So I would talk to them and find out what’s available to you. I don’t know what’s available in Georgia. But I would find out what’s available. I would talk to some of the advocacy groups in your state – the MS Association or Society, the Rheumatoid Arthritis Association. Because they not only are advocacy groups advocating for assistance for these diseases, they also have an awful lot of information on help that’s available to people. That’s surprising to me, Mary, that people often put off getting assistance and don’t deal with that for a long time. And, particularly, the people in the disability community, at least in my experience in New Jersey, are wonderful advocates and very eager to be helpful.
I think people think only in terms of Medicare or Medicaid or their health plan. They have got to try a variety of different contact points to put together that safety net. I am fond of saying that the safety net gets woven one strand at a time, and you need many strands to make a good, effective safety net.
Mary:
I don’t know if you can help this person from Brooklyn, New York. The question is, “What can be done about MD specialists such as those at hospitals for special surgery that do not accept insurance, not even Medicare? How do they expect their patients to pay when very often their earning potential is limited due to their RA? It’s as though the patient is chasing his or her own tail.“
Mr. Knowlton:
Actually, this is on the climb in the United States. Some physicians are saying, “I don’t take insurance, I don’t accept insurance at all.“ You get what you can from your insurance company, and I’ll bill you the rest.
Or I will bill you, and then you put your insurance payments with it. It’s very common. But the first line of defense is to go talk to the physician, and say, “I know you don’t want to take Medicare, and I understand, Doctor, and I really want to remain as your patient, but I can’t afford this. Can you work with me?“ And generally they do. Remember that medicine is also competitive. There are other alternatives. The other alternative is to find another specialist who is a little bit better in terms of insurance or Medicare.
Mary:
And next is a related question from New Jersey, “My hospital doesn’t accept my insurance anymore. Help. I need a lot of surgeries.“
Mr. Knowlton:
The hard answer to that is finding a hospital that does. Again, there are two alternatives here. One is to go to a hospital that does accept their insurance. The second is to try to find a way within that hospital, so the same thing I said about the physician.
Mary:
David, I am sorry. We are almost out of time, but before we go, I would like to get some final thoughts from you. What would you like to leave our listeners with?
Mr. Knowlton:
The most important thing to me, Mary, to leave your listeners with is that there is help out here. You have got to work to find it, but there is help. HealthWell is there to help many people in the circumstances you are describing. And the other is advocate for health reform. The system is broken, and we have got to get decision-makers to see it that way.
Mary:
Thank you, David, and you, the audience, for joining us.
From HealthTalk, I am Mary White.