Navigating Insurance after Transplant

Learn about your rights to access and use health insurance.

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Navigating Insurance after Transplant

July 16, 2020  Part of the Virtual Celebrating a Second Chance at Life Survivorship Symposium 2020

Presenter: Domna Antoniadis JD, Senior Staff Attorney, LegalHealth, New York Legal Assistance Group

Presentation is 28 minutes with 21 minutes of Q&A.

Summary: Health insurance may be available to you through an employer, association, Medicaid, Medicare or an Affordable Care Act marketplace. A variety of legal protections are available to healthcare consumers under Federal and State laws.


  • Your Certificate of Coverage is the most important insurance document, containing the details of your policy’s exclusions, coverage limitations, appeal rights, and definitions.
  • Several federal laws regulate health insurance: the Consolidated Omnibus Budget Reconciliation Act (COBRA), the Health Insurance Portability and Accountability Act (HIPAA)  the Affordable Care Act (ACA) and the Employment Retirement and Income Security Act (ERISA)
  • State health insurance laws apply only to those plans that are not self-funded, ie. plans where employers have purchased health insurance rather fund health insurance claims out-of-pocket

Key Points:

01:37   Health insurance marketplaces, created by the Affordable Care Act, enable you to purchase health insurance if it is not provided to you by your employer

05:06     The Affordable Care Act has several provisions that protect patients: patients cannot be denied coverage due to a pre-existing condition; plans can't keep patients from joining clinical trials; and limits on coverage amounts and lifetime maximums have been eliminated.

09:18    In 43 states and the District of Columbia, oral parity laws limit the out-of-pocket cost for patients who take oral drugs to treat cancer.

10:19   29 states have laws that protect patients from “surprise” bills that occur when someone gets emergency care by an out-of-network provider.

13:31     Plans are required to provide benefits within a reasonable time frame and to provide an Explanation of Benefits that includes the reason why all or part of a claim is denied.

14:53    There are specific steps and timelines that must be followed when appealing denial of payment for a medical service claim.

16:21     The letter you create to file an appeal should include the specific reason you disagree with the decision and the specific laws and policies that support your reasoning.

24:06   COBRA allows you to extend your health insurance for a period of time, for a fee, if you lose your job.

25:00   Some patients who lose health insurance may qualify for Medicaid, depending on the state in which they live.

26:41   Patients who are over 65 or have had a social security disability for 24 months may qualify for Medicare

Transcript of Presentation

00:00     [Moderator] Welcome to the workshop Navigating Insurance after Transplant. My name is Mary Clare Bietila, and I will be your moderator today.

It is my pleasure to introduce you to today's speaker Domna Antoniadis. Domna is a senior staff attorney with the New York Legal Assistance Group's Legal Health Unit. She conducts legal clinics at Bellevue Hospital Cancer Center and she works extensively with providers and patients to address health-harming legal needs, with a focus on navigating barriers related to stem cell transplantation. Please join me in welcoming Ms. Antoniadis.

00:52     [Ms. Antoniadis] No problem. Thank you so much to the Blood and Marrow Transplant Information Network for putting together this virtual symposium. I am honored to be speaking with you all today on navigating insurance. My name is Domna Antoniadis and I am an attorney at the New York Legal Assistance Group, as we just said.

So just as a disclaimer, I do need to say that this is not legal advice and the goal of the presentation is ultimately to provide you with useful general information. The slides may feel pretty dense but that's because I really want you to have this information so you can use it as a guide in your unique situations. So let's jump right in because there's a lot to cover.

Health insurance market places, created by the Affordable Care Act, enable you to purchase health insurance if it is not provided to you by an employer.

01:37     We will be touching on several topics but the primary focus will be on private insurance. If someone is unable to obtain insurance from employment, union or association, and they don't qualify for Medicare, then the health insurance marketplace which, was formed following the Affordable Care Act, known as the ACA, is the place to start. These marketplaces operate in every state and are one-stop shops to purchase private insurance with essential benefits and assessed for premium assistance or Medicaid. BMT InfoNet has excellent information on navigating the marketplace and how to find and shop for health coverage. So you can actually find more information in the presentation in the link below.

So health benefits can be complicated and are very fact and detail specific. However, understanding a few basic concepts can help you better navigate your coverage, advocate for benefits, but also set realistic expectations.

Health insurance policies are contracts. Ambiguous language is interpreted in favor of patients.

02:40     So pretty much, insurance is like a contract. You or your employer agree to pay a set premium, participate in cost sharing, follow the contract guidelines. And in return, your health insurer agrees to cover certain services in your policy and those required by law.

So next is sort of this fancy Latin word called contra preferendum, which is a term used in contract law. It pretty much means, if the language in a contract is ambiguous or unclear, then it should be interpreted against whoever drafted the contract. This is especially true in insurance because the consumer has no control over the drafting of the policy and they're not considered experts in insurance. So vague language in a policy is supposed to be interpreted against the insurer.

Also, public policy overrules policy language. So for example, if your policy is subject to State Law, and your state says you have the right to say, breast reconstruction, then this would trump a policy which says breast reconstruction is not a coverage service. There is a public interest in ensuring that consumers are protected, which is why health plans are so heavily regulated and why there are so many laws which apply. It's supposed to be fair, while also being mindful of costs.

Key federal laws governing health insurance are the Consolidated Omnibus Budget Reconciliation Act (COBRA), the Health Insurance Portability and Accountability Act (HIPAA) and the Affordable Care Act (ACA)

04:03     So, speaking of public policy, let's briefly touch on a few key federal laws which apply in some ways to most private health benefit plans. For more detailed information, like fact sheets or consumer assistance then go to the department of labor's website at

04:19     So the Consolidated Omnibus Budget Reconciliation Act, COBRA, gives workers and their families who lose health benefits, the right to continue group health benefits for limited periods of time under certain circumstances.

The Health Insurance Portability and Accountability Act of 1996, HIPAA, created national standards to protect individuals' medical records and other personal health information. Most relevant to insurance though is the Privacy Rule, which creates an enforceable right for individuals to request access to their health insurance records, as well as to records used by the health plans to make decisions about individuals. This is really helpful, especially if you're having to appeal a denial.

The Affordable Care Act provides many protections for cancer patients

05:06     The Patient Protection and Affordable Care Act, also known as the ACA, is a comprehensive health care reform law enacted in March 2010. It impacts just about all aspects of health care delivery. Most relevant though for cancer patients is expansion of Medicaid; creation of the marketplace; the fact that children can stay on a parent's policy until they're 26; no more denials of pre-existing conditions; plans can't keep patients from joining clinical trial; better access to appeals and external review, as well as no more limits on coverage amounts, so no more lifetime maximums.

The Employment Retirement and Income Security Act (ERISA) governs health insurance plans offered by most employers

05:46     The Employment Retirement and Income Security Act of 1974, also known as ERISA, sets standards for privately established retirement and health plans. Any health insurance coverage offered through employment is considered an ERISA plan and therefore has to comply with the ERISA Law. The most important thing to know about these plans is how the policy is funded, because the way that it's funded impacts if it has to comply with State and Federal Law or just Federal Law.

Self-funded insurance plans are those where benefits are paid by the employer; fully insured plans are those where benefits are paid by an insurance company.

06:19     So what is the difference between self-funded or fully insured health benefits? The key aspect is, who ends up paying the medical claims. If a policy is fully insured then the employer will buy insurance, which is actually considered a product, and pay premiums to an insurance company who ultimately takes on the risk of paying medical claims from their pocket. If a policy is self-funded, then the employer directly pays the claims from their own funds. In this case, your health benefits are actually called an employee welfare plan, but most people still call it insurance.

It can be hard to know right away if your health benefits are self-funded or fully insured because most self-funded employers will still use an insurance company to administer or manage the policy. This means that whether you're fully insured or your policy is self-funded, you may still get the same card from Blue Cross or Cigna.

If you can't figure out how your policy is funded then you could contact your HR Department or the Department of Labor. The Department of Labor's EBSA branch, which is Employee Benefits and Securities Administration branch, is actually really helpful if you just have general questions about your specific employee plan.

So you're going to notice throughout the presentation, I'm going to be directing you pretty frequently to certain regulators, because I find these regulators to actually be very helpful and responsive, especially when you're feeling frustrated or stuck. The good thing also is that even if maybe you contact the wrong regulator, they'll usually tell you who's the right one to contact.

Whether your health insurance plan is self-funded or fully insured determines whether only federal laws, or both federal and state laws, apply to it.

08:01     So the main reason it can be helpful to know how your policy is funded is because it will let you know if it needs to comply with state-specific law. Self-funded employee welfare plans, so the ones where the employers paying the costs, are only subject to Federal Law, they're not subject to State Law. However, because insurance products are regulated by the state, that means if your policy is fully insured then it needs to comply with both Federal and State Law.

Think of it this way. Insurance is meant to protect people from financial catastrophe. It's in a state's best interest that insurance sold to their residents actually protects them and is fair. So that means that states will tell insurance companies, "If you want to sell insurance to our residents, then you need to be licensed, and to be licensed, you need to comply with our requirements". So why does State Law really matter? This is because many states have expanded consumer protections which are available to you. It also means that your state's Department of Insurance has the ability to assist you or can investigate a complaint. I'm going to highlight two specific laws which can apply when a health plan is subject to State Law.

In 43 states and the District of Columbia, oral parity laws limit the out-of-pocket cost for patients who take oral drugs to treat cancer.

09:18     One is Oral Parity. 43 states and the District of Columbia have Oral Parity Law. Normally cancer medication, taken from an IV, is covered under a plan's medical benefits. But cancer medications taken by mouth are covered by the pharmacy benefits. Pharmacy benefits usually require the patient to cover a percentage of the drug cost, which is a big challenge for cancer patients since chemotherapy drugs are very expensive. With Oral Parity there are limits on an out-of-pocket cost for oral medications which are used to treat cancer.

The COVID-19 pandemic has actually led to an increase in patients receiving oral cancer medications in order to limit their risk from the virus. While there's no Federal Oral Parity Law, recently health plans are encouraged to be more flexible, and this would really be a strong case to request an exception or to file an appeal or directly contact the regulator or your local Congressional Representative.

29 states have laws that protect patients from “surprise” bills that occur when someone gets emergency care by an out-of-network provider.

10:19     Next are Surprise and Balance Bill Laws. 29 states have laws to protect patients who receive surprise medical bills. These balance bills usually occur when someone receives emergency care by an added network provider or when a patient receives treatment in an in-network facility ,but ends up being treated by an out-of-network provider.

Your insurance Certificate of Coverage documents the specific benefits to which you are entitled, and is more comprehensive that the Summary plan usually given patients.

10:42     So we started by talking about some of the bigger picture aspects of health benefits. What actually makes up your policy and how do you even know what is covered? The plan administrator of an ERISA covered health benefit plan is legally obligated to provide to participants, free of charge, several key documents. These include your summary plan description, which is pretty much a summary of your plan document, the summary of benefits and coverage, which using clear plain language, summarizes key features of the plan like your cost sharing, coverage limits. This is usually what you're getting when you start a new job and they're telling you to pick a policy. And your Certificate of Coverage or the Complete Benefits Policy. This document contains the specifics of how your benefits are administered and is very long. Sometimes the Certificate of Coverage is included in your summary plan description.

If you create an account on your health insurer's website they will usually have these documents under your benefit information tab. If for some reason you still can't find them, then you can again contact your HR or the Department of Labor and they'll help you.

Your complete policy is really the most important document you can get from your health plan, but it can go by so many different names that it may be hard to locate. As a rule of thumb, I tell people to ask their insurer or HR to look for the really long document, since these can usually be a 100 to 150 pages long. The COC, the Certificate of Coverage, will tell you all about your policy and goes into precise detail on your policy exclusions, coverage limitations, appeal rights, and definitions. At some places, the COC will mention external sources which are used for making decisions.

Your insurer will rely on supplemental documents to administer your benefits mostly because otherwise, your policy would be thousands of pages long and constantly being revised. Many of these guides are publicly available and are found under the provider tab of your insurer's website. You have the right to review these documents so if you can't find them then ask. So you know these documents are guides. So if there is conflict between the insurer's clinical guidelines and your health plan's policy language, so what's actually written in your Certificate of Coverage, then your policy language is going to overrule. The same thing applies if let's say, there's a conflict between an applicable law and the clinical guidelines or even your health pen document. In those cases, the law rules.

The Explanation of Benefits document sent to the patient explains what and why the health insurance plan denied certain expenses.

13:31     Plans are required to pay or provide benefits within a reasonable time after a claim is submitted. For urgent care, it's as soon as possible but no more than 72 hours. Pre-authorization should be no more than 15 days and post service, no more than 30 days. When a health plan makes a decision on a claim they must send the consumer an Explanation of Benefits, EOB. The EOB includes a breakdown of the claims submitted, how much, and if the insurer will pay towards the claim, any consumer cost responsibility, reasons for any denials and specific information, including deadlines on how to appeal, and how to appeal a decision.

Plan and insurers must include specific language in an EOB if they are denying a claim. By looking at your denial notice you should be able to tell what was denied, why, and what you can do if you disagree. Make sure you really read the EOB. Sometimes there are just errors which can be easily corrected by contacting your insurer. So maybe there's the wrong code or it says that you're in an HMO and it's out of network when actually you do get added network benefits.

If you disagree with an insurer’s decision to deny payment for a claim, you can file an appeal.

14:53     If you can't correct the issue with your insurer, then you, your provider, and an authorized representative has the right to file an internal appeal. For ERISA plans and most other private insurance policies, you have 180 days from the date of the denial notice. Your insurer must make a decision within a set timeline, depending on the type and urgency of the claim.

Insurance companies in all states must offer an external review process that meets Federal Consumer Protection Standards. You can request an external review primarily on denials that involve medical judgment or that treatment is experimental. Some states have different additional areas where an individual can request an external review. Take a look at the link below because there are certain specific things you need to include when requesting an external appeal, and ultimately the external review decision is going to trump any other decisions.

So, what if your case is urgent, then what? Firstly, you can request an external review even if you haven't gone through the internal appeal process. The final decision must come as quickly as your medical condition requires, it can even be delivered verbally with just a written approval within 48 hours.

How to draft a letter of appeal.

16:21     Now what do you actually do if you disagree with the denial? We just talked about the appeals and external appeals but really how do you even start? The first part is to draft an appeal letter. There isn't a required format but these steps are a good guide on making sure you draft a strong letter. When you start, make sure you are very clear about the basic information. You want whoever is reading the letter to easily be able to input and identify your information, which claim you're appealing, and any relevant dates.

Specify any laws or guidelines which you don't think were followed, even if you're not sure. Like if they refused to give you the clinical guidelines, even though you asked, or they took a really long time to make a decision on the claim. Request copies of the guidelines and records used in making the decision. Remember this is where HIPAA comes in, you have the right to this information.

Look up in your certificate of coverage any definitions which are used to justify the denial. For the example we're going to go through, we're going to use a denial stating that a claim is not medically necessary. Then use specific facts, documents, and details to argue why you should get the treatment.

So, in our example, Peter was denied coverage for XYZ Medication because the insurer claimed it was not medically necessary. So in this policy, medically necessary has a long definition. So we can break it down that medically necessary health services are health services that a physician exercising prudent clinical judgment would provide to a patient for the purposes of evaluating, diagnosing or treating an illness, injury, disease or symptoms. Now we apply Peter's specific facts to show that treatment is medically necessary. I like to imagine using because after each part so that I can be sure to address each element of the definition.

So here we could say, XYZ Medicine meets the definition of medically necessary and should be covered because a physician, exercising prudent clinical judgment, prescribed it to treat Peter's CML; because it was recommended by Dr. Smith, an oncologist with 20 years experience at ABC Hospital; because Dr Smith has treated Peter ever since he was diagnosed six months ago and knows his full medical history; because it is based on his experience with similar patients and his specific work with Peter.

Great, so let's keep going by plugging in "because". This is consistent with generally accepted standards of medicine because it is FDA approved for CML, which is what Peter has; because research shows that XYZ Medicine is less likely to cause infertility than other medications; because Peter is 25 and is recommended by the American Society for Clinical Oncology that minimizing infertility in young adults is important; because studies show fertility and concerns increase depression; because studies show depression may reduce the benefits of certain treatments. Address each element of the denial reason. It feels tedious and completely unnatural, but it will help you focus your letter on the relevant facts. Many times I'll see a person write an appeal letter which is very emotional and full of important details but not actually address the reason the service was denied, and they end up losing the appeal.

How to appeal part of an insurance policy that violates state law.

20:01     So how about another example. What if you're appealing a part of a policy which is conflicting with State Law? Here we have Cathy, who just switched insurance, and is in the fully insured ERISA health plan, so she's getting her insurance from an employer and it's regulated by the state. She's been stable on XYZ Medicine for several months and uses a manufacturer copay assistance card to help with cost. Her recent prescription is denied and she sees in her EOB that it's because her medication is subject to step therapy. Pretty much that she needs to try other medications first before it's covered.

She gets her Certificate of Coverage and finds a definition and she also finds her new insurance company's prescription drug list. She sees that XYZ Medication is listed as being subject to step therapy and referred to the insurer's step therapy guidelines and finds the one for her medicine. She sees that she could be exempt from step therapy requirements if it's for continuation of therapy, but the guideline says it won't count if she receives any financial assistance from a drug companies patient assistance fund.

So now what? Well for starters, Stacy did all the right things, she checked her coverage she referenced the relevant documents. We know that her policy is subject to Federal Law but also it's subject to State Law because it's fully insured. So then I like to do something called a gut check. Does this feel fair? There's a pretty reasonable reason why step therapy might be required since it's encouraging patients to use less expensive but equally helpful medications first, and it seems reasonable that asking a person to switch a cancer medicine, which is already working for them, just because they switched insurance plans would be unhelpful or harmful. But punishing them for using any copay cards feels a bit off. So when you have this feeling, that's what I encourage you to do some digging. Check your state insurance website, check sort of the federal guidelines or the Department of Labor.

So, in this case, it actually turns out several states have laws and regulations in regard to step therapy. In Cathy's case, New York allows a patient to request an override. It also says that step therapy guidelines need to use clinical evidence to support [inaudible 00:22:39] protocols. So in her appeal, Kathy should include this information and use because, to show how the facts apply.

Once you have your appeal letter, you want to make sure you include any other helpful documents which you can find in the submission checklist. They include a letter from your doctor, copies of your records, a signed HIPAA form if you want your insurance company to speak to others who are helping you, as well as copies of parts of your policy or any other laws or regulations you're referencing. Make sure that you mail this by a certified mail or just some way that you can track the fact that your appeal was sent.

If for some reason you're worried that your insurance company will not properly handle your appeal, or if things are urgent, then it's okay to reach out to your local regulators. You can contact your insurance regulator, the Attorney General, the Department of Labor, file complaints, and even ask your local representative to help. There are different regulators to contact depending on the issue and insurance type. I usually find contacting your State Attorney General's Office and insurance department are always a good start. For plans through your employer then also contact the Department of Labor. For Medicaid or Medicare contact your local health department.

If you lose your job and benefits, COBRA allows you to extend your health insurance for a limited time and for a fee.

24:06     Well, what happens if you end up losing your benefits? If employment is ending, then COBRA or mini COBRA, which is a state's version of COBRA, could allow you to extend coverage for a fee. You may qualify for a special enrollment through the marketplace or you may qualify for Medicaid.

I won't go into much detail here, but obviously COVID-19 has brought up a lot of concerns on losing benefits. There are constant changes and exceptions being put into place on all levels of government and even private companies. I highly encourage you to look at the Department of Labor's website and your local insurance department's website to see what may apply for you. There have been a lot of exceptions to certain enrollment periods and deadlines have also been extended.

Medicaid may be an option for some patients who are out of work and have no health insurance.

25:00     Medicaid is an important option if you cannot get coverage through the private market. Because it's jointly funded by the federal and state government, there's a lot of flexibility and variety as to who qualifies and what are the requirements. You're going to want to contact your local state health department to get the details on eligibility just because every state has a very different way of managing their program.

Another option for someone who is working but doesn't qualify for insurance from their employer is via the Medicaid Buy In For Working Disabled. People who qualify for these programs can have a higher income so long as they are disabled and are doing a set amount of work than normally required for traditional Medicaid.

The Medicaid act requires states to provide a fair hearing for patients who have been denied eligibility or services. More broadly, when the government takes an action that could harm an individual, then you have a right to finding of fact with an impartial decision maker. If your Medicaid is also through a Medicaid Managed Care Plan, you may actually have to do a more traditional insurance appeal, but you can find more information about that either directly from your local insurance department or the local health department. The benefits though, is that because Medicaid is considered a right, you sort of have this additional protection of an administrative hearing, even if you ultimately lose your insurance appeal.

Patients qualify for Medicare if they are over 65 or have a social security disability for 24 months.

26:41     Now what about Medicare? A person qualifies if they are over 65 or have had social security disability for 24 months. Medicare rules are very detailed and we don't really have time to address them today, but in most cases you do want to elect Medicare when you're given the option because you may face penalties later on if you don't. Additionally, if you elect Medicare while working or return to work, there are different options which can help you access affordable benefits. I am going to strongly recommend that people take a look at the Medicare Rights Center Website for questions about Medicare benefits.

So, how does Medicare intersect with other options? If a person has Medicare and a private insurance, a lot of times what will happen is that Medicare will be your primary and the private insurance will be secondary. This is really good when individuals are probably working and are concerned that maybe the Medicare benefits are not going to be as good as private insurance, while also making sure they don't get penalized for not accepting the Medicare. The other thing is, what about Medicare and Medicaid? Well oftentimes, if a person has both that means that Medicaid can end up paying for some of your Medicare premiums or other cost sharing that you might be subject to when you have Medicare.

So, I think for right now, if there's questions I am happy to answer them.

Question and Answer Session

28:16     [Moderator] We do have a few questions. Thank you so much, that was a wonderful presentation and you're right, it was chock full of information. I do have a couple questions. The first one is from M, and it has to do with the time frame for filing appeals and all of that. The hospital I was treated in didn't bill properly, they tried to charge the full price. A year later when I noticed what happened, they again submitted. I had changed insurances by then and the claim was denied because I submitted it a year later. Now they're charging for a full balance that is higher than the co-pay. Does this seem reasonable? They feel like they made an error due to not filing in a timely fashion.

29:09     [Ms. Antoniadis] So generally, if you're receiving care at an in-network facility, it ultimately is their responsibility to submit the claims within the time frame. A lot of insurance companies are going to have penalties that will come into play if someone submits it too late or if a provider has it past their time frame. What can happen is that sometimes a in-network provider may miss that deadline and then ultimately try to pass the bill on to the patient, because the insurance company denied it. In those cases, it's a pretty good opportunity where you can actually either resend the information to the health insurer showing that this isn't your fault, it can also be an opportunity to do a complaint actually about the health care provider or the hospital, because ultimately it really is their responsibility to submit the claims in a timely fashion and pretty much if they ended up missing the deadline you shouldn't be held responsible for it.

So if you're getting, let's say, a bill from the healthcare facility saying that you owe $5,000 because the insurance denied it, that's a good time for you to actually write back to the health care facility saying that you dispute this. By saying in writing that you dispute a health bill pretty much means that they have to prove to you why you ultimately are responsible. If they can't do that within a certain time frame, then pretty much it usually means that you're not going to be responsible for that bill. So it definitely is a situation where it doesn't really seem like it's been done properly and it can be ways that you can either try to advocate via the insurance channel, but also through consumer protections that are available when someone is getting a bill from a hospital.

31:09     [Moderator] Okay, just a follow-up question, if is there a certain time frame that patients are required to adhere to, to file an appeal? Do you have only six months or how is that determined?

31:27     [Ms. Antoniadis] So it's going to depend depending on the type of insurance you have. So for most plans, it's going to be 180 days. But all this information is going to be on your explanation of benefits or your certificate of coverage. If it's not there then we kind of go back to that initial term I used earlier on, the contra preferendum. If there's no information telling you what the deadline is then you have flexibility if you can't meet it. But generally it ends up being six months, especially when there's a crisis or situation like what we're having with the pandemic, there is flexibility, and if you can show a good reason why you weren't able to do it within that time frame there's a good chance that you'll still be able to get in your appeal.

32:12     [Moderator] That's really helpful, because a lot of people, as soon as they're diagnosed with issues and need a stem cell transplant or chemo, they are admitted to the hospital and may be there for a while and they're not checking their mail, so being able to appeal is really important. Okay, another question comes in from Jen, are there any particular conditions that bone marrow transplant patients develop that you know of that cause specific issues with coverage?

32:43     [Ms. Antoniadis] So right now there's not going to be any specific conditions that are going to limit your ability to access coverage. So in the past, there could be pre-existing condition exclusions if you ended up losing coverage and not having it again. But because of the Affordable Care Act that's really not something that happens now. The main issue will pretty much be is if let's say you have an open enrollment deadline that you miss, but regarding to a specific health condition, they're not going to impact your ability to access health insurance, especially comprehensive policies or plans.

33:24     [Moderator] Okay great, that's really helpful. Would you advise using an attorney to file an appeal?

33:31     [Ms. Antoniadis] I mean I feel like most attorneys always tell you to talk to attorneys, but I think there's also the reality of the situation that most people are in. When you are having an issue with your insurance and you're in the middle of treatment or you have a family member who's in the middle of treatment, trying to find a lawyer and talking to them is going to be the last thing on your mind. Literally what I would say is, the best thing you can do is once you get your policy you read it, you read your explanation, and you put together the letter, and at the same time file a complaint. Because oftentimes when insurers are maybe reviewing your appeal they're looking at thousands of them or you may have someone who's in Washington looking at your policy which is in Connecticut and they may not be so familiar with maybe some of the specifics about Connecticut Law. So what's really helpful is, if you're filing the appeal and you also complain to the specific regulator, it usually means that insurance companies going to take a better look at your appeal. So that's usually the way that I think is the easiest way to really make sure that your appeal is handled in a proper and timely fashion.

34:54     [Moderator] Okay. Another question comes in from Wayne. His insurance company denied an ambulance charge and say that it's out of network transport, is there anything he can do?

35:08     [Ms. Antoniadis] So this is definitely going to go back to whether or not your plan is subject to State Law. Because, as we said, there are I think I said 29 states which have a specific exception for what a person can do if they get a bill from an out of network provider when it was in the courses of an emergency treatment. If that's the case you can absolutely appeal. And even if you're not sure if your state has it, you still should appeal and you kind of would just argue this was an emergency, I had no control over where I was going and you kind of again, use because, because I was unconscious, because my blood sugar was super low, and therefore I shouldn't be responsible for this. So definitely you can appeal and if you're in a state that has some of these protections, you can point that out and again try to file a complaint if you need to.

36:09     [Moderator] Great. All right so if you lose your hair due to transplant as most of us do, does your insurance company have to pay for a wig?

36:19     [Ms. Antoniadis] So it's going to depend really, so this is where we go back to your Certificate of Coverage. So the reason it's 100 to 150 pages long is because it has a lot of information, and it's going to list things like exclusions or specific coverage about what might be available. So sometimes a policy will actually include coverage for wigs, they may provide coverage for hair implants, but all of that's really going to be within the details of your policy.

36:55     [Moderator] Okay, if those policies, I've read them, they can be very confusing and the language is quite foreign to most of us. Are there any particular websites or services you might recommend for people just navigating what their plan has and how that can work for them?

37:13     [Ms. Antoniadis] There's really not going to be anything that will help you navigate it. The best way I can say is, look at the index in the beginning and see what is it that I'm trying to figure out. Am I trying to see if something's excluded? Well, let's see, is there a section on exclusions? You look there, and then you go to your section on exclusions and you search through and you find, okay this is going to be excluded if X, Y and Z. Let's say your question is about appeals, so you're going to look and find, okay where's the section on the appeals? You find it, you look at and you kind of try to break it down line by line. They are in theory supposed to be at a very accessible reading level, but what happens is that the information is so dense and is just all put together that people just get so overwhelmed.

It is a really good time though to ask people to help you read these policies because generally when you're stressed and you're sick, the last thing you want to do is try to go through some jargon about medical necessity or whether or not something is going to be exclusion or trying to find the prescription drug rider and going onto the website. It's really, really useful to just have another set of eyes because it's not supposed to be that only a lawyer can understand this. The average person is supposed to be able to figure it out. And if you can't, then it is a good opportunity to reach out to your local regulator, as I keep saying.

38:51     [Moderator] Great, and actually a comment just came in from Mary Jean, she says, her insurance company assigned her a transplant manager and that person walked her through all of the coverage and it was her go-to person for any questions. And actually I recall as well, I was assigned a similar person, Blue Cross, Blue Shield assigned a nurse manager, which is a little different, they didn't quite have that same skill set, but more and more, I think insurance companies are trying to help people with really complicated complex cases, are you finding that?

39:24     [Ms. Antoniadis] So it definitely will happen because a lot of it is, especially for someone who's getting a transplant, if they end up, let's say, missing a certain appointment, an important appointment, or are not sure how to manage if they're getting neutropenia or when to go to the emergency room, it ultimately is going to be more expensive for the insurance company. So for some of these really complicated and expensive procedures, I am definitely seeing that the insurance companies are making an effort to really have the patients have someone guide them through the process.

40:00     [Moderator] Great. Another question just came in that was about fertility treatments. Does insurance have to cover fertility treatments if you are infertile after transplant or treatment?

40:13     [Ms. Antoniadis] So that's a really interesting question. So I've generally seen two ways that fertility treatment is addressed in insurance policies. So one is, for the young adult patient who is about to begin chemotherapy, and because of the type of chemo they're going to have, it's assumed that this treatment is going to make them infertile. So ultimately the doctor recommends that they will freeze their eggs or bank sperm.

So what ends up happening pretty frequently is that insurance company's going to say, well this isn't medically necessary, this is preventative. So if let's say, she gets the chemotherapy and then becomes infertile, we'll cover that, but we're not going to cover it ahead of time. So that ends up being a really big problem. But there are actually, I think, four states that have rewritten their insurance laws to say that, in a sense, preventative fertility treatment has to be covered by insurance. So I know New Jersey has that law and so does New York. But again I think those are also opportunities where you can get a little creative and where you can actually advocate with your insurance either to make an exception because banking sperm is going to be way cheaper than ultimately if they are going to try to have to give you fertility medications after a course of treatment.

So in regards to fertility treatment after transplant, I do see that a lot of policies do actually include that and there's going to be a lot more states that end up requiring fertility coverage if someone loses the fertility. But generally, you obviously want to try to do this before someone has fertility issues.

42:02     [Moderator] Absolutely, okay, so is it true that insurance can no longer deny coverage because you have a pre-existing condition?

42:12     [Ms. Antoniadis] So i want to say yes, but I'm also going to just put in caveats, that sometimes you'll have exceptions. So what happened following the Affordable Care Act, is that it was put in place that any non-grandfathered plans would have to get rid of the pre-existing exclusions. So the next question is, okay well then what is a grandfathered plan versus non-grandfathered?

For a plan to be grandfathered, it means that from 2010 until now, they couldn't have made any changes to their premiums, their policy design, or any of the cost sharing. So the only plans that can actually deny coverage for pre-existing condition are the ones that are ultimately exactly the same as they were 10 years ago. There's very few policies that actually have been able to do that because generally over the years they do change their costs. So I will say that it is pretty much most plans cannot deny it but you may still have the rare policy that has happened to hold this grandfathered status over the years.

43:34     [Moderator] Okay. All right, do you recommend paying for let's see, supplemental cancer insurance plans?

43:45     [Ms. Antoniadis] So, I mean if you're going to get a supplemental insurance, that's going to be different than basically your comprehensive medical plan. So your comprehensive medical plan is going to usually be subject to the protections under ERISA or your local insurance department. A lot of the supplemental insurances are going to have very specific language about what they can and can't cover. It's really ultimately a decision on your end. I mean, it's not going to give you really the level of protections that a regular policy will have, but in some ways it can be really helpful because sometimes they may include coverage for things that your regular health plan isn't going to cover. So I think for in those cases, it's really going to be depending on your financial situation, what the policy is going to cover, how it's going to intersect with your regular health benefit plan, on whether or not it's really worth it.

44:46     [Moderator] Okay. Does insurance have to pay for the care you receive under a clinical trial?

44:54     [Ms. Antoniadis] So under the Affordable Care Act, they don't have to pay for... well okay, so under the Affordable Care Act, they do actually have to cover the general medical costs associated with the clinical trial. They can't say, well we're not going to cover any of it because it's a clinical trial, But they're not going to cover the experimental portion.

So let's say you're going to be getting a bone marrow transplant and one of the things is going to be a new drug to try to help reduce GVHD. So in that case, it's going to have to cover the cost of the transplant, maybe the blood work, the scanning, but it's not going to cover the cost of the drug, the new drug, or any of the medical treatment that's being done specifically to monitor that drug. I mean it will cover, let's say if they're checking your blood levels, but it's not going to be on whether or not this specific drug is impacting your brain in a certain way. So it's going to cover most of the cost, but it's not going to cover the experimental portion, but that's usually the part that the sponsor ends up picking up.

46:06     [Moderator] That has definitely been my experience with clinical trials that whoever that researcher is in their organization, pick up those costs and it's clearly in the statements that you sign beforehand. Okay let's see, we have a comment from Karen and she says that it's really important to prove you've been actively trying to resolve an issue with your insurance company. In her case, the hospital had waited too long to find an error and had to write it off and she was trying to resolve it before the one year mark to avoid going to a collector. But I think she's basically saying that it really helped her to keep the dialogue going with the insurance company to make sure that really good records kept for all of this so that you can negotiate and get things resolved.

47:01     [Ms. Antoniadis] Yeah, across the board, it is really important to keep records. And I'm a real big proponent of having people one, making the electronic account with their insurer because you're able to do things either with email, that way you have a record. And also you're able to really easily see your explanation of benefits which normally get mailed to your house which, if you're admitted, you're not seeing. And also, so you can share information, but it always is helpful to write down dates, times, who you spoke to and in as much opportunity to put it in writing because you can then use that later on, either if you're negotiating with a health care facility, or in regards to trying to prove something with your insurance.

47:51     [Moderator] Okay. All right, well we've got one final question: if my outstanding hospital bills go to a collection agency, will that affect my credit score?

48:05     [Ms. Antoniadis] So hospital bills are a little bit different than your traditional bills that you will get. So if let's say, you aren't paying your credit card on time, and it goes into collections, those will almost automatically go on your credit report. For health care bills, even if they go into collections, that doesn't mean it's going to directly impact your credit. I'm of course going to try to be very careful by not saying that it's never going to happen, but from what I've generally seen, it's really only if then the collection company tries to either file a claim in court to get the money, or if they try to freeze your bank account or do something in that regard, when it will impact your credit. So getting the bill from the collection company, let's say 90 days after a past due medical bill, I generally have not seen those impact your credit the way that if that was the same situation with your phone bill or again a credit card.

49:24     [Moderator] Okay that's unbelievably helpful and that is where we're going to end our presentation today. On behalf of BMT InfoNet and our partners, I would like to thank Ms. Antoniadis for her very helpful presentation and thank you the audience for these excellent questions-



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