Updated March 01, 2021
Knowing your rights and options is critical for a chronic pain patient.

Knowing your rights and options is critical for a chronic pain patient.(JENNIFER JAFF)

Jennifer Jaff, Esq., is an insurance and disabilities attorney and founder and executive director of Advocacy for Patients with Chronic Illness.

Q: If I don't have insurance through an employer or spouse, what kind should I look for?

A: Number one, look for a high-risk pool—insurance that is designed for people with chronic illnesses. Find out if your state has one by calling your state insurance department. Some have good coverage and are reasonably priced, some have lousy coverage and are incredibly expensive. Ask a lot of questions and look into it carefully to make sure it's going to meet your needs.

Q: Will it cover pre-existing conditions?

A: Even though it's designed for people with chronic illness, it still may have a pre-existing condition waiting period. If there is a high-risk pool and it's decent insurance, that's the way to go. The other kind that you might be able to get on an individual basis is guaranteed issue insurance. That means that the state has passed a law telling insurance companies they must offer a policy to everyone who wants one. The policies differ widely. Often the guaranteed issue plans are very basic coverage, but it's better than nothing.

Some states have COBRA conversions, so if you're coming off of a COBRA policy because you left your job, went through a divorce, or are an adult coming off of your parent's policy, you can convert that COBRA policy into an individual policy with the same insurance company and that avoids the pre-existing condition problem.

[ pagebreak ] Q: What if I am self-employed?

A: If you are self-employed, look for a company that will insure a group of one. That is a much better alternative than individual insurance, because if you go from one employer-based group plan to another, you don't lose your pre-existing condition coverage. If you go to an individual plan, you're going to lose your pre-existing condition coverage. Employment-based group plans are always better protection for pre-existing conditions.

Q: And if none of those options are available to me?

A: You have to get creative. Creative solutions are things like joining a local chamber of commerce so that you can get into their plan or joining a professional organization—for example, a bar association. Some church groups have plans. There are little insurance plans for groups of people all over the place, and they're hidden unless you know where to look.

A lot of the time having a really good insurance agent is very helpful, if they're really knowledgeable. People are welcome to call us, and we can help them to do the research. The website www.healthinsuranceinfo.net is incredibly useful. It's maintained by the Georgetown University Health Policy Institute, and there's actually a paper on every state's insurance. You can look there to see if your state offers the COBRA conversion or guaranteed issue or if there's something else.

[ pagebreak ] Q: What are my avenues for getting a pre-existing chronic condition covered?

A: A pre-existing condition must be covered under an employer-based group policy. That's federal law. If you get coverage of your pre-existing condition under an employer-based group policy, and you go to another employer-based group policy with no more than a 63-day lapse in coverage, you keep your pre-existing coverage, and it's seamless. If you have more than a 63-day break in coverage, there can be a pre-existing condition waiting period of up to a year.

All bets are off when you are talking about an individual policy. Most states say that insurance companies are allowed to entirely exclude pre-existing conditions or just not offer you insurance at all. So the key is to get the employer-based group insurance and keep it with no more than a 63-day lapse in coverage ever. But COBRA counts as that coverage. You can be on your spouse's employment so you don't have to be the one that's working. Even if you're disabled, you can maintain that coverage for your pre-existing condition.

More about chronic pain

Q: If I am choosing between different employer-based plans, what should I look for?

A: Think about the most expensive things that you are going to need and ask whether those things are covered. One of the biggest chronic pain issues that we are dealing with right now with both Medicare and commercial insurance is coverage of Actiq, which is FDA-approved for the treatment of breakthrough cancer pain, but it is not FDA-approved for non-cancer pain. Because it's very expensive, a lot of insurance companies are saying they will not pay for Actiq outside of cancer. Their rationale is that it's not FDA-approved for anything else, but insurance companies pay for things that are not FDA-approved all day, every day. This is a rationale for denying coverage. So, if you have a choice between Blue Cross and United Healthcare, call them both and say, "Will Actiq for non-cancer pain, for instance, be covered under my plan?" Write down the date, the person you spoke to, and the answer. If you get a yes, hold onto that note and enroll in that plan. Obviously, you're not going to be able to anticipate everything; do the best you can to focus on the things you know you're going to need.

Q: If two plans are pretty equal, what else might distinguish them for someone who has chronic pain?

A: Look at the complaints filed against the companies. Most state insurance departments have that on their website. If they don't, you can call and ask. You're looking for companies that have a lot of complaints against them. One of the big changes over the last couple of years with health insurance is that there are external reviews through the state insurance department. After you've finished appealing a denial of coverage through the insurance company, you can then go through the state insurance department and get an unbiased review. The results of those reviews are maintained at the state insurance department. If a company has had a lot of those filed against them, you can bet that they're denying coverage a lot of the time, and if they lose a lot, then they are denying coverage in places where they really shouldn't be.

[ pagebreak ] Q: Among HMOs, PPOs, and POS plans, is there one that is best for people with chronic pain?

A: Not an HMO plan because they have a gatekeeper, and you want to have access to your specialist when you need it. If you have a chronic condition, you're going to have more interaction with the health-care system than other people, so you want that interaction to be as straightforward as possible with as few obstacles. Having a gatekeeper that you have to ask for permission to go to a specialist is just another obstacle to overcome. PPOs and POS plans are not terribly different. So, if you are choosing between those, just look at deductibles and co-pays. Also look to see if your providers are covered by one versus another.

Q: What if I don't have insurance? How can I get affordable health care?

A: There are several options. You can look for a community health center or a federally qualified health center (FQHC). Look on the Internet for a list of FQHCs in your state. At any of those you will be able to get medical care on a sliding-scale basis. The downside is that you're not going to be able to see the same doctor every time you go, and you may not see a specialist. An urgent-care center will be a lot less expensive than going to an emergency room. So, if you can't find a community health center, I would look for an urgent care center before an ER. That said, hospitals are the easiest kind of providers to negotiate payment plans with because they are so used to doing it.

Every non-profit hospital has an obligation to provide what's called charity care. So you can go to the patient financial services office and ask for a financial aid application. After you submit it, they may write off your entire bill, heavily discount it, or, at the very least, work out a payment schedule. What you should not do is wait until these things hit a collection agency. It's much more difficult to negotiate with a collection agency than it is with a healthcare provider.

Q: What are my options to get medications covered if I don't have insurance?

A: Most pharmaceutical companies have patient-assistance programs. You fill out an application and give them financial information to show that you are in need and that you don't have insurance. If you meet their test, you can get free prescription medication. There is one catch. The pharmaceutical company isn't allowed to give you medicine for an off-label use. But as long as you are talking about on-label uses, it's fairly easy to get free prescription drugs. The other thing is that doctors have samples. You don't have to meet any kind of financial aid test or anything like that, you just have to ask the doctor for the sample or coupon and that gives you a significant discount.

[ pagebreak ] Q: What are co-pay relief programs?

A: A lot of insurance plans these days are 80/20 plans, where the insurance pays 80 percent and you pay 20 percent. Let's say that you have rheumatoid arthritis and need Remicade treatments. They will cost you roughly $5,000 every six to eight weeks, so a 20% co-pay is $1,000. If you can't afford it, you can apply to one of two co-pay relief programs. One is through the Patient Advocate Foundation, the other is the Patient Access Network Foundation.

Q: How can I get an off-label treatment paid for by my insurance?

A: You may not be able to. There are drugs that have been used for off-label purposes for years and years and insurance companies don't balk at all. It's the newer very expensive drugs that are a problem. There is pending litigation against Medicare to try to get Medicare to pay for off-label uses. If that litigation is successful, it will change the landscape for commercial insurance as well. I actually never saw a denial of coverage of something that was off-label until Medicare had a drug benefit and they decided to deny coverage of off-label uses. So if Medicare is forced to reverse its position, you may be all set with your commercial insurance.

Q: What about getting them to cover a pain specialist?

A: That should not be a problem. If you have an HMO, and you need a referral from your primary care physician, that's when things can get a little tight, because some HMOs provide incentives to primary care physicians not to refer to specialists. But in any other plan you ought to be able to go to a pain-management specialist. The key is finding one who accepts your insurance. A lot of top pain management specialists don't like to take insurance.

Your insurance company is required to maintain a provider directory that tells you every single doctor that is in network. If pain management is covered, and they don't have an in-network pain-management doctor in your geographic location, then you should be able to go out of network but not pay an out of network rate. If they can't provide you with a covered benefit in network, it's up to them to pay out of network.

Q: How do I make that happen?

A: Look to see who's in network, and if there isn't anybody, you go to your insurance company and say: "You don't have anybody in network for pain management. Is there anybody not listed in your provider directory?" They'll say: "Yeah, there are these ten doctors," and you'll call all of them, and they will say "We're not taking new patients," or "We don't take your insurance." So, go back to your insurance company, and say there is nobody in network, and ultimately the insurance company should cover it. If your insurance company won't cover it, and you're in desperate need, my advice is go to the doctor, and appeal the denied claim on the grounds that you tried every possible option in network. If you really get in trouble, that's when you call me.

[ pagebreak ] Q: What's the most important thing I need to do if I am filing an appeal?

A: Rule number 1: do not blow your deadline. If they give you 180 days, and you file on day 181, that is fatal to your appeal. Resist the temptation to do what the insurance company will invite you to do which is to call them and ask them to appeal. All they will do is look at the same information they have already looked at and say no again. The most important thing to do is to gather your medical records. If the insurance company says the treatment is experimental, collect medical journal articles. Put all that together with an appeal letter that stresses the medical necessity.

What I see all the time is patients sitting down and hand writing a letter that says, "I am in so much pain, I tried this, I tried that, and none of it worked. You have to cover this, so that I can have a life." That gets you absolutely nowhere with an insurance company. You have to stress objective medical evidence: medical records that show any tests that your doctor has sent you for and other treatments you've tried. The insurance company is more likely to believe office notes than a doctor's letter. A lot of doctors think they should be writing letters to insurance companies. But insurance companies expect doctors to advocate for their patients and so when they get a letter from a doctor, they look at that as just a piece of advocacy. It's not medical evidence.

Q: Are appeals generally successful?

A: Seventy percent of insurance appeals are successful, and now with the external appeals process I think that number is going up. You should absolutely appeal. You have nothing to lose and everything to gain. The fact that 70% are successful just tells you how often the insurance companies are denying things counting on you not appealing, so you absolutely have to appeal.

Q: What are my options if they deny the appeal?

A: Generally, there is more than one level of appeal inside the insurance company. And then, after that, you have one of two options. If your insurance plan is fully funded, which means your employer has contracted with the insurance company to pay for their employees' health care then in most states there is now an external appeal you can do through the state insurance department. Just contact the state and ask for the application forms. If the plan is self-funded, which means that your employer asks the insurance company to administer the plan, but you're employer actually pays for your medical care, then your final appeal is generally made directly to your employer.

Q: If I lose all my appeals, are there any other options to have my treatment paid for?

A: There really are two different kinds of appeals, pre-service appeals and post-service appeals. A pre-service appeal is a request for prior authorization. In that case, you haven't incurred any expense, and if your insurance company says no, then you have the choice of paying for it yourself or foregoing the treatment. If it's a post-service appeal, then you're stuck with a medical bill and that goes back to what we talked about before, try to work out a payment plan. If it's a hospital, see if they give charity care. But don't miss a payment. If you do, they're going to kick your claim to a collection agency. The minute you go to a collection agency, everything gets more expensive because you have to pay the collection agency costs on top of everything else.

Q: When should I involve an attorney?

A: In an ideal world, you would be able to consult an attorney to handle the first appeal. The problem is that hiring an attorney in a case like this is so expensive that you might be better off just paying for the medical care. I only know of two organizations that do free insurance appeals. Mine is one and the other is the Patient Advocate Foundation. In some states, there are other places to go. Here in Connecticut, the attorney general's office has a health insurance consumer advocacy program that helps to advocate for insurance coverage. So it's always good to check with your state insurance department. They will know what resources are available in terms of getting assistance for preparing an insurance appeal.