NHL Access and Affordability Archives

The impact of NHL isn’t just physical, it’s also financial. Navigating coverage and out-of-pocket expenses is a minefield for many patients and care partners.

Let us help you make sense of costs, coverage and where to turn to for help.

More resources for Non-Hodgkin Lymphoma (NHL) Access and Affordability from Patient Empowerment Network.

Access To Healthcare As A Human Right

One of the keys to health literacy is understanding your role, as a patient, in the care delivery process chain: learning what you need to know to ask questions that can help clarify decisions with your clinical team; how to assess the information you’re given to understand what you need to do, or to consider, as next steps in your treatment journey; who to consult for expert input and guidance to fact-check, and gut-check, the information you’re processing and the decisions you’re making.

It’s a lot, particularly when you’re dealing with the impact of what I (and Firesign Theater) like to call “a really big disease.” It’s even more – way beyond “a lot” – if you have to also fight for the right to access treatment for your diagnosis.

This may seem like a problem that belongs to someone in a developing country, not one that happens in the USA, but that’s not the case, far too often. In America, a person given a diagnosis of cancer, or of Parkinson’s disease, or any other “really big” condition, not only has to navigate learning all about that condition, but also has to figure out how to pay for the treatment for it.

In a recent survey from West Health and Gallup, some alarming stats surfaced about Americans and access to medical care:

  • 45% of people surveyed feared bankruptcy if they had a major health event (“really big disease” or accident)
  • 77% feared that rising costs will significantly damage the U.S. economy
  • More than 3 million people borrowed more than $10,000 to cover medical expenses in the past year

Which brings me to my main point here – access to medical care is, I believe, a basic human right. If the system that’s providing your care has been priced out of your reach, and you wind up bankrupting yourself, and your family, to access care, is that really “care,” or a symptom of a broken system?

Sure, the doctors and nurses, as well as the hospitals and clinics where they work, deserve to be compensated for their work. I’m not suggesting that medical care be free. What I am suggesting is that, in the US at least, the goal of the “system” has been to protect the status quo – the revenue stream, which at last official count (2017, from the US Centers for Medicare and Medicaid Services) was $3.5 trillion, of which about $1 trillion is estimated to be waste. Does that sound like a healthcare system, or a RICO scheme? Asking for millions of friends.

Until we, as a nation, confront this issue of access to medical care, and the inequity of access caused by the “chaos behind a veil of secrecy” that marks the pricing of that access, we’ll be stuck in the loop we’ve been in since the end of WWII, when Harry Truman tried to initiate a national healthcare program and got beaten up on the White House lawn by Congress, and the American Medical Association.

America is founded on the idea that every person has a right to “life, liberty, and the pursuit of happiness.” It’s hard to have life, or liberty, or happiness without access to healthcare. Let’s live up to our founding principles, and guarantee healthcare access to all. Anything less, and we’re betraying the American promise.

Patient Assistance Programs (PAPs)

Patient Assistance Programs: A Guide for Patients

Cancer is costly. Each year, it costs $180 billion in health care expenses and loss of productivity, says the American Cancer Society. For individuals, it is the life-saving medications they need that can cost the most. According to cancer.gov, 90 percent of Americans say that cancer drugs are too expensive, and the prices have been steadily increasing for the last twenty years. Some cancer drugs debut on the market at a cost of more than $100,000 per patient per year, some for as much as $400,000. With this type of pricing, even insured patients can be facing out-of-pocket expenses in the tens of thousands.

When patients can’t afford their medications, it can lead to people taking them in lower doses or skipping them altogether, and that can lead to serious consequences, such as shortened survival times. High-cost medications can also lead to financial ruin for some patients. Chronic lymphocytic leukemia (CLL) patient James Miller, whose copay for his experimental and life-saving medication is “outrageously expensive” at $790 a month, says that, medications could eventually bankrupt people, especially if the medications are a patient’s only option for survival.

It’s literally a matter of life or death for patients like Miller to find funding solutions for their cancer drugs. Luckily for him, his medication is covered through the manufacturer’s Patient Assistance Program. Drug manufactures created Patient Assistant Programs, commonly known as PAPs, to provide qualifying patients with free or discounted medications.

While just about every manufacturer has an assistance program, one of the first manufacturers to offer a PAP was AstraZeneca. Company representative Colleen Kempf says, AstraZeneca began offering patient assistance over 40 years ago. The program now covers the company’s marketed medicines, and Kempf says, in the past ten years, the company has helped over 4 million patients with access to medications. “Our programs are driven by our corporate value in putting patients first. We believe that we have a role to play to support patients, and since 2005 have expressed this commitment in a very public way through our advertising.” Their PAP slogan, “If you can’t afford your medications, AstraZeneca may be able to help,” might be familiar to many as it is frequently heard at the end of its television adds and leads patients to its website which is where most PAP information can be found.

Find a PAP

The most important thing to know about PAPs is that they are available. They all vary a bit and have different names, but chances are, your drug’s manufacturer has one. AstraZeneca’s is called AZ&ME. Genentech, the manufacturer of the medication Miller takes for his CLL, calls its program Genentech Access. Celgene refers to its as Patient Support, and Takeda refers to its as Help at Hand.

Once you know assistance is available, it’s fairly easy to find it. All it takes is an online search of the name of the drug, coupled with the words “patient assistance program”, and you should be well on your way to the application process.

John Rosenguard, a multiple myeloma patient, learned about PAPs while doing research about insurance carriers. In addition, Celgene, the manufacturer of his medication, led him to its assistance program through an online risk management survey he was required to take when he was prescribed the medication.

There are also websites specifically designed to help patients find assistance. Non-profit website needymeds.org was formed in 1997 with the intent of helping patients navigate PAPs. Now a partner with Patient Empowerment Network (PEN), the vast NeedyMeds database of PAPs can be searched using the link below. All you have to do is enter the drug name to discover whether or not a PAP is available.

 

 

While it may seem like the best place to learn about PAPs is the internet, patients and drug companies both recommend you include talking to your healthcare provider about options. Miller learned about the Genentech PAP he uses through his doctor who put him in touch with a specialty pharmacy who provided him with a PAP application. Miller says he would not have known about the PAP on his own, but that without it he would “go broke”. He advises other patients to ask their treating physicians about options. “Any doctor prescribing an experimental drug like that will have a relationship with a specialty pharmacy,” he says.

Miller’s advice is good, but most people don’t seem to be following it, according to cancer.gov, which reports that only 27 percent of cancer patients, and less than half of oncologists, say that they have had cost-related discussions. But, nearly 66 percent of the patients say they want to talk to their doctors about costs. They should.

AstraZeneca’s Kempf says the company ensures that healthcare providers, patients, and patient groups are made aware of its AZ&ME assistance program. “As with any type of information or program, providers will have different levels of understanding regarding available PAP programs,” says Kempf. “The AZ&ME program works closely with healthcare provider offices on applications at their request and we’ve also seen some offices support their patients by assisting with the enrollment process for their patients.”

PAP Enrollment

Each company has a different process for enrolling in its PAP. Some applications require extensive financial information, while others require basic information; Some require doctors to fill out a portion of the application, while others only need a signed prescription. Miller says for the Genentech enrollment process, he had to provide his financial information and that the application had two or three pages for his doctor to fill out. Rosenguard says the Celgene application process was extremely simple and that it took about two weeks for him to be accepted into the program.

The best way to know what the enrollment process is for the manufacturer of your medication is to go to the company website. The websites are easy and straightforward for patients to navigate. For example, the Celgene Patient Support site has large buttons that say “Enroll now” and “Financial Help”. The words are in big, bold type, and each step is written in clear language. The site also provides a phone number, email, and fax information. There is an option to download the application form if you prefer to print it and fill it out by hand. The steps you will take are listed clearly, and what you need to include with the application is listed clearly. The process was easy and efficient, says Rosenguard.

 

Most applicants shouldn’t require any assistance beyond what the manufacturers can provide on their websites or by phone, but there are some businesses who will help patients complete the enrollment process for a fee. The prices vary, as does the quality of service.

PAP Qualification

Not all patients will qualify for assistance. While each program has its own qualifying criteria, and there may be different requirements for different medications produced by the same manufacturer, in general, to qualify for a PAP, a patient must:

  • Have very limited or no drug coverage from public or private sources
  • Must demonstrate a financial need based on a set income and assets
  • Provide proof of US residence or citizenship.

“The AZ&ME program is intended to serve patients most in need and has income eligibility criteria that speak to this design,” says Kempf. “The program primarily serves patients that have no insurance coverage or patients that face affordability challenges with their Medicare cost-sharing requirements.”

In addition, the amount of assistance a patient receives and the length of time each patient can stay on the program varies. AZ&ME patients without insurance are required to reenroll in the program annually, and Medicare patients are required to reenroll at the start of each calendar year.

“It is important for patients to understand the eligibility requirements as well as the documentation requirements that are typically associated with applications,” says Kempf. “Ensuring that the application is filled out, complete, and submitted with the required documents, helps ensure an easy enrollment process.”

PAP Basics

Once accepted into the program, both Miller and Rosenguard say that there is not much of a time commitment from them. They both receive their medication through a specialty pharmacy. Miller says his is delivered to his door each month, and Rosenguard says he is able to refill his prescription online, and also has a monthly follow up phone call with the pharmacy. In addition, Rosenguard is required to follow risk management guidelines to participate in the Celgene PAP. Guidelines, as specified by Celgene include, following safe sex practices, not donating blood, and monitoring cuts with blood loss.

AstraZeneca also uses a central pharmacy to dispense its medications to patients, says Kempf. “All medications are dispensed by a pharmacy and are sent directly to the patient’s home unless it is a medication that requires in-office administration by the physician. In office administration products are sent directly to the healthcare practitioner,” she says.

Are PAPs Worth It?

For patients struggling to pay for their medications PAPs may be the only option, and the pharmaceutical companies seem committed to providing the service. Kempf says that at AstraZeneca, they are always evaluating patient feedback to see how they can better serve patients, including streamlining the application process.

Rosenguard recommends the PAP programs. He says, co-pays, like his that were $200 a month per medication, can add up quickly. “The benefits were noticeable and met my needs to control costs over the long term,” says Rosenguard. “Plus, it educated me to help others (employees, support group members, friends) who might need this information in the future.”

How Medicare Covers Cancer in 2019

Cancer is a much more common disease than we’d like to believe. According to the National Cancer Institute, 38.4% of the people in the United States will be diagnosed with some kind of cancer during their lifetime – that’s 125,068,800 people out of our current population.

Some of the most prevalent forms of cancers among seniors are breast cancer, colon cancer, and lung cancer. Because aging can bring a higher risk factor for certain cancers, it’s important you know how well Medicare covers cancer. Fortunately, Medicare covers cancer quite well.

Common Cancer Treatments and Services

First, let’s talk about treatments and services that most cancer patients receive. This will help you to understand how specific procedures are covered under Medicare. Below is a short list of treatments, services, procedures, etc. that cancer patients may receive.

  • Chemotherapy
  • DME (durable medical equipment)
  • Hospice
  • In-patient hospital stays
  • Medications
  • Oncologist visits
  • Radiation
  • Skilled Nursing Facility (SNF) care
  • Surgery

It’s true that Medicare covers most treatments, procedures, and services needed for managing cancer, but you need to know more than that. You should learn how each service is covered and how much you’ll pay for it.

While it’s hard to know for sure how much you will pay down to the cent due to certain factors, you can at least get a ballpark estimate of what you can expect to spend.

Medicare Part A Coverage

In short, Medicare Part A covers your in-patient hospital stays. In addition, stays at an SNF and hospice care are also covered under Part A among a few other things.

This may not seem like much for an entire part of Medicare to cover; however, if you think about how expensive these services are, it’s easier to understand. Also, depending on how recently you have left the hospital, there are times that Part A could cover things like DME and home health care too.

Costs Under Part A

Like all other parts of Medicare, Part A has a deductible. However, you will soon learn the Medicare Part A deductible is unlike any other deductible in Medicare. Most deductibles are annual; however, Part A’s deductible is per benefit period.

What this means is that if you go to the hospital multiple times a year, you could experience multiple benefit periods, and that means you could pay the Part A deductible more than once a year. As of 2019, the Part A deductible is $1,364.

The $1,364 deductible pays for your first 60 days in the hospital. If you stay in the hospital for more than 60 days, you will owe a daily copay. The daily copay for Part A start at $341 and increases to $682 after day 90.

The deductible also covers your first 20 days in an SNF if your doctor sends you to one to finish out your recovery. If your SNF stay is longer than 20 days, you will pay a daily copay of $170.50.

All costs after 150 days in the hospital or 100 days in an SNF are your responsibility.

Medicare Part B Coverage

Medicare Part B covers your outpatient services, treatments, procedures, and then some. They even cover some things while you’re in the hospital. Things like chemotherapy, radiation, surgery, and oncologist visits are all examples of things that can be covered under Part B.

Costs Under Part B

Medicare Part B has a monthly premium that is based on your income. Most people pay $135.50 each month in 2019 for Part B. The annual deductible for Part B in 2019 is $185.

Once you have paid your deductible, Part B will cover 80% of the cost for Medicare-covered services and treatments, like the ones listed above. The other 20% of the cost is your responsibility. Sometimes you can incur Part B charges while you are in the hospital, such as when a physician performs an outpatient surgery or you are using a hospital facility to get a diagnostic imaging scan, which is covered under Part B.

Let’s look at an example. Joe goes to the hospital for a minimally invasive surgery. He stays in the hospital overnight for observation. He will pay his Part A deductible of $1,364, his Part B deductible of $185, and 20% of the cost for the surgery and any other Part B services provided to him while in the hospital.

Medicare Plans That Can Help

Just from that one surgery, Joe could be paying thousands of dollars out-of-pocket. However, if he had a Medicare plan, he could be better protected from having to empty out his wallet.

Medigap Plans

Medicare Supplement plans, also known as Medigap plans, help cover the patients from having to spend so much out-of-pocket. A Medigap plan could potentially eliminate all of the costs that Joe would normally have to cover himself.

A few Medigap plans that could help Joe immensely are Plan F, Plan G, and Plan N. Plan F would cover everything mentioned above, while Plan G would cover everything except the $185 Part B deductible.

Most people only get one opportunity to enroll in a Medigap plan with guaranteed approval. So, if you have been diagnosed with cancer before becoming eligible for Medicare, you should enroll in a Medigap plan during this one-time open enrollment window.

Medicare Advantage Plans

Because Medigap plans usually have a higher premium, some people elect a Medicare Advantage plan instead. As long as you have one or the other you will be able to have extra coverage.

Medicare Advantage plans provide extra coverage in a few ways such as providing additional benefits, offering lower copays, and including a maximum out-of-pocket. In 2019, the set maximum out-of-pocket spending limit is $6,700 for in-network services.

This means, even if you can’t afford a Medigap plan, you will at least be covered from spending more than $6,700 for in-network services in any given year.

It takes some research to decide whether a Medicare Advantage or Medigap plan is the right fit for you, so make sure you learn how each type of coverage works before you choose a plan.

Medicare Part D Coverage

Part D is the part of Medicare that is in charge of your drug coverage – well, most of it anyway. There are some cases in which Part B would cover your medications, but we will get into that in a little bit.

Costs Under Part D

Each Part D plan has a premium. Currently, the national average for Part D monthly premiums is $35. You also have an annual deductible included in your Part D drug plan. In 2019, the maximum deductible a plan can set is $415.

After you have met your deductible you will move into the second stage of your Part D plan called the initial coverage stage. During this stage, you will pay copays for drugs covered under your plan. The copay you pay for any given drug depends on the tier the plan has the drug classified as.

After you and the carrier together have spent $3,820, you will move into the coverage gap. During this stage, you will pay a specified percentage depending on what type of drug it is, brand-name or generic.

Once your out-of-pocket spending hits $5,100, you’ll move into the catastrophic coverage stage which is the stage you will remain in until January 1st. In the catastrophic coverage stage, you will pay no more than 5 percent of your drug costs.

Drugs Covered Under Part B

Medicare Part B covers medications that are administered to you in a medical office setting. For example, chemotherapy is administered to you, therefore, Part B covers it, not Part D.

Think of Part D as your drug coverage for prescriptions you pick up at the pharmacy yourself. However, even Part B covers some of those.

Better Safe Than Sorry

We hear all the time, unfortunately, of how someone didn’t get Medicare Part D when they were first eligible because they weren’t taking any medications at that time. Well later, come to find out, they have been diagnosed with cancer and now must wait until the fall election period to enroll in a Part D drug plan.

Since they waited, not only will they have a lifelong late penalty tacked onto their premium, they have to pay 100% out-of-pocket from their medications until they get enrolled in a plan.

The potential of being diagnosed with cancer is also a reason why you should enroll in a Medigap plan when you are first eligible. Like we mentioned earlier, if you wait until it’s too late, you will be denied coverage due to your diagnosis. It’s always better to be safe than sorry.

 

How to Pay for Long-term Care on a Fixed Budget

Long-term care costs are rising yearly, and with more people approaching age 65+ than ever before, the rates are not expected to fall. Not everyone plans ahead and unfortunately, we cannot know for certain when someone will begin to need long-term care, as it varies case by case. For the elderly population specifically, many individuals begin long-term-care after a sudden life change that renders them incapable of caring for themselves, like a stroke or a fall. In the best-case scenario for a stroke or a fall, patients return home after successful rehabilitation. However, as unfortunate as it may be, many individuals are unable to return to their former health.

Sometimes, there is no sudden change and it is simply advanced age that is the main factor determining whether or not a person can safely remain independent. When someone does begin to need-long-term care, depending upon the severity of the person’s situation, they are either taken care of by professional caregivers, family members, or moved into an institutional setting. Statistically speaking, about 80% of elderly people who need long-term care receive services within their own home or the home of a family member. The remaining 20% move into facilities, specially designed to accommodate a wide range of needs. Regardless of where we choose to spend our twilight years, there are costs involved. Below, I’ll outline some common ways people are able to fund their long-term care.

What Exactly is Long-term Care?

Long-term care simply refers to the type of assistance provided to people with cognitive or functional limitations to help them perform daily activities. If patients are unable to return safely home after a hospital stay, facilities continue rehabilitation to try and strengthen patients and improve their quality of life. The more a resident can do by himself or herself (eating, using the bathroom, bathing, and changing), the happier they generally are.

According to the Medicare Current Beneficiary Survey, the elderly population in nursing homes has declined over the past ten years. Through more advanced rehabilitation practices and an increased availability to services, the majority of long-term care recipients are able to live with loved ones, in assisted living, or group homes if they do not need the intensive 24hour supervision that comes along with nursing home residence. Nevertheless, the question still remains: how to pay for the care you need.

Medicaid Long-term Care:

For many people, Medicaid is the best option when it comes time to pay for long-term care. If your loved one meets certain medical and financial requirements, or they are already receiving SSI benefits, they may be eligible. For most states, the monthly income limit is around $2,200 and the asset limit is $2,000. For Arizona specifically, the monthly income limit is $2,205. Anything beyond these values needs to be spent towards care or the applicant may be ineligible. The medical eligibility is stringent and the recipient can only live in Medicaid approved homes or receive Medicaid approved services in the community. Even with all of the requirements, this is still the best option for many families. For up-to-date Medicaid information, follow this link.

Long-term Care Insurance:

Although a person may have paid for medical insurance their whole life, medical insurance companies do not cover long-term care. There is, however, such a thing as long-term care insurance. There are different policies with different features, but generally, a person pays a monthly premium and when long-term care services are needed, the policy will pay out a certain amount, usually in the hundreds of thousands. Similar to life insurance, premiums are cheaper if the person buying insurance is young and healthy. Those already in need of long-term care services are not able to get coverage. Although these policies do not last forever, the payout is usually sufficient for the entire cost of care.

Sometimes, however, the care outlasts the insurance coverage. Don’t worry because many states have what is called a long-term care insurance partnership, useful when people spend through their policy and need to apply for Medicaid coverage. The partnership is a program between the state and private insurance companies. Partnership policies protect assets by reciprocating dollar for dollar what policyholders pay into their policies. For example, if you bought a Partnership Policy with a maximum benefit payout of $200,000, you are able to protect $200,000 of your assets. For married couples each spouse needs to purchase their own policy.

Once the original long-term care insurance coverage is exhausted, you may apply for Medicaid with the benefit pay out’s worth of assets exempted. This is extremely beneficial because again, most states have an asset limit of $2,000. In addition to the asset limit, Medicaid penalizes people who have given away or sold property below fair market value within the five years preceding the need for long-term care assistance.

Qualified Income Trust:

If an individual is over the financial limit for Medicaid long-term care coverage, some states allow applicants to spend down income towards medical care while others allow the creation of Qualified Income Trusts, also known as Miller Trusts. Miller Trusts place any income beyond the state’s limit into a trust, designating the state Medicaid program as the beneficiary once the long-term care recipient dies. The problem many people have with spend-down and Qualified Income Trusts is that for the most part, all assets and income eventually go towards care. Long-term care insurance, as described above, helps prevent the complete drain of assets for people who are hoping to leave behind a legacy.

Reverse Mortgage:

Another option that has gained popularity in recent years is the reverse mortgage. A reverse mortgage is not complicated, but may not be the best option for every situation. Essentially, a reverse mortgage is a loan borrowed against the equity of a home, but rather than making monthly payments, the bank reversely pays the borrower. As long as the borrower remains in the home they do not have to pay the bank.

If the borrower moves to a care facility or passes away, then the bank claims the property to pay off the amount given in the loan. This is a good option if the homeowner is healthy enough to remain at home, but requires some caregiving services. Also, this is for people who are not interested in leaving their home behind to loved ones. See here for a more detailed explanation of pros and cons.

Even with 80% of elders receiving “free” care through informal caretakers such as family members, the Congressional Budget Office estimates the value of this donated care at approximately $234 billion for 2011, the last year calculated.[1] This number is determined based on calculating forgone wages, time that could be spent employed elsewhere, transportation costs, and performing duties otherwise performed by paid healthcare aids.

For family caregivers it is especially important to reach out to a social worker for benefits you may not be aware of in your home state. If you are a family caretaker, your loved one may be eligible for respite care, a paid-for medical alert, home health services, or community based waivers paid for by Medicaid depending on financial and medical eligibility. Don’t wait until it is too late and start planning today.


[1] See page 2. http://www.cbo.gov/sites/default/files/44363-LTC.pdf

 

Facts About Medicare You Didn’t Know

If you or a loved one are approaching the 65-year-old mark, it’s time to get serious about Medicare. There are a lot of things to look forward to as you get older (and wiser), and Medicare can be one of them if you take the time to understand the program and how you can benefit from it.

Unfortunately, a lot of confusing misconceptions surround Medicare. This leaves people unsure of how to make the best choice for them. Luckily, we have all the best facts you didn’t know about Medicare from a licensed HealthMarkets agent who knows the program inside and out. Keep reading to make sure you have the right coverage when you reach Medicare years.

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Medicare is Not Free Insurance

The most common misunderstanding about Medicare is that it is free insurance sponsored by the government. Like all health insurance in the United States, you have to pay premiums for Medicare Part B, Medicare Advantage, and supplemental coverage. The good news is that the government secures costs for Medicare Part B based on your income. The standard premium for Part B in 2018 is $134 assuming your income is under $85,000 as a single taxpayer or $170,000 for joint returns.

If you receive social security benefits, this can help cover the costs of Medicare premiums. For those who opt for Medicare Parts C and D or any supplemental coverage, you have more freedom in the price depending on the plan you choose.

Medicare Will Not Cover All Treatment

Once again, like most traditional health insurance, Medicare will not 100% cover all health costs. Inpatient services involve a deductible over $1300, and you’ll need to pay a fee per day for any coverage in a facility for over 60 days. With Medicare Part B, you’ll need to still pay 20% of the Medicare-approved amount for care, and this is in addition to your annual deductible.

The best way to prepare for the costs of treatment is to do your research. If you know there are certain prescription drugs you’ll need or special doctors you’d prefer to visit, consider a Medicare Part C plan which gives you more freedom in coverage.

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There is a Deadline to Sign Up

The best time to sign up for Medicare is when you turn 65. This is called the Initial Enrollment Period, and it begins 3 months before you turn 65. It continues for another 3 months after your birthday. If you miss this initial period, you’ll face deadlines if you choose to join later. You’ll also be limited to enrolling during the specific open enrollment times during the year, which could lead to limited coverage.

There are a few exceptions to this rule. First, if you already receive social security benefits, you are automatically enrolled in Medicare on your 65th birthday. Also, if you’re still working and covered by your employer, there are different options. When in doubt, speak to an advisor at your local Social Security office for the specifics of your situation.

You Might Need Supplemental Coverage

Medicare is a great program, but there’s a list of things the program does not cover. Things like long-term care, hearing aids, dental care, or even eye exams are often not covered under Medicare. This is why many seniors opt for a Medigap policy to include extra coverage for these gaps in treatment. Talk to your doctor about what you’ll likely need coverage for in the upcoming years, and prepare yourself with the right additional policy, as needed.

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You Have Access to Preventative Care

While you’ll likely need to pay for treatment and complex health services, you receive a wide array of preventative care for free. It’s always a good idea to take advantage of these services to stay on top of your health as you age.

The most comprehensive option is the annual wellness visit which includes a personalized prevention plan. Every 5 years you’ll have access to a free cardiovascular screening, and annually you can get a flu shot and routine cancer screenings. The sooner you’re able to catch a potential problem, the less expensive and complicated it will be to treat.

It’s vital you take your health seriously as you age. It’s important to understand that while Medicare covers much of your health care, it does not cover everything. You’ll also need to follow the enrollment rules to take advantage of the program’s benefits. Knowing what Medicare is and is not will help you decide on the right coverage when it matters most.

The best way to prepare for the costs of treatment is to do your research. If you know there are certain prescription drugs you’ll need or special doctors you’d prefer to visit, consider a Medicare Part C plan which gives you more freedom in coverage

Health Insurance and Cancer: Your Mileage (and Coverage) May Vary

Financial toxicity is the phrase used to describe the impact of the cost of treatment on patients. The NIH describes financial toxicity as “problems a patient has related to the cost of treatment.” No matter what kind of health coverage plan you have, if you get a cancer diagnosis you’ll quickly discover all the things you’ll have to pay for, from co-pays on chemotherapy infusion drugs to the intricacies of “co-insurance,” where an insurer will pay a percentage, usually 70-80%, of the cost, with the patient responsible for the remaining percentage.

Financial toxicity isn’t limited to cancer – ask any person with diabetes who relies on insulin to stay alive about that – but the cost of cancer treatments is high, and rising higher. Cancer patients are put in the position of having to decide whether they’ll get the treatment their oncology team prescribes, or if they’ll put it off until they have the money for it. Patient assistance programs at pharmaceutical companies can offer some help, but there is no guarantee that a patient assistance program for a specific cancer drug will help everyone who can’t afford the drug.

An NPR piece covered this last year, framing the story around a man with advanced lung cancer whose oncologist prescribed a new drug, Alecensa, for his treatment. Alecensa’s annual list-price cost is $159,000, with Medicare patients like the man in the NPR piece paying $3,200 per calendar year. The patient in the story was prescribed the drug in late 2016, but decided to forego filling the prescription until January 2017, to avoid having to pay $6,400 within 60 days for the treatment.

This is part of a pattern of cost shifting across the health payment landscape. Premiums for private insurance rose 170% from 1999 to 2011, far higher than the average increase in wages in the same time frame. Prescription co-pays also rose dramatically with the introduction of tiered drug coverage plans that passed more cost to the patient. For example, from 2000 to 2012, the proportion of individuals with a drug plan that had three tiers increased from 27% to 63%.

Exacerbating the immediate financial anxiety of negotiating for a treatment that could mean the difference between life and death, there’s the impact of medical bills on a patient’s long-term financial health. A Consumer Financial Protection Bureau report in 2014 revealed that almost 20% of credit reports had medical debt reported on them. In 2016, the Commonweath Fund noted that, “As of late 2016, 28 percent of U.S. adults ages 19 to 64 who were insured all year were underinsured — or an estimated 41 million people. […] Half (52%) of underinsured adults reported problems with medical bills or debt and more than two of five (45%) reported not getting needed care because of cost.”

I’ll put a face on this issue by introducing you to a friend of mine, Linnea Olson, who has been successfully beating Stage IV lung cancer for over a decade. Linnea has insurance coverage under COBRA, which is costly, but helps keep her alive by covering the costs of treatment that aren’t covered by the clinical trials she’s been part of over the years. She recently got a notice that her insurance had been terminated – the story on that is here, on her blog – which put her in the “high anxiety” zone, to say the least. That post is a very clear example of how financial toxicity impacts someone with cancer. Her situation lit fires across the cancer patient activist community, launching a campaign to get her coverage back. Four days later, she received word that her coverage had been reinstated. She shared that news publicly on her blog, too.

My point here is that this should not be way Americans are expected to deal with a cancer diagnosis – by facing the fight of their life while their financial lives are laid waste. The costs of treatment shouldn’t be the first thing someone has to think of when facing a life-threatening illness. The patient community is in sync on that. The oncology clinical community agrees that treatment costs, and financial toxicity, are in need of clearer discussion. The American Society of Clinical Oncology published a report in 2017 that included a recommendation that discussion of treatment cost and coverage “would […] facilitate rational discussions of efforts to use more cost-efficient regimens, use less expensive alternatives, or perhaps forego extremely expensive and toxic options that have little chance to provide meaningful benefit.”

I recommend that we keep advocating for more transparency in insurance coverage, and in the in-clinic discussion of the costs and benefits of cancer treatments. It also couldn’t hurt to advocate that our elected representatives craft legislation that makes that transparency a requirement, not an option.

Financial Empowerment for Cancer Patients

The Kaiser Center reports that one-third of Americans aged 18-64 years are put into debt because of cancer. The debt is caused as a direct or indirect result of high medical costs, an inability to work and loss of income. More than half of those incurred debts of at least $10,000. The risk of debt or bankruptcy is further exacerbated among younger patients and those with lower incomes. The National Cancer Institute estimates that there are 454.8 new cancer cases per 100,000 men and women each year. Now, more than ever, is financial preparedness a key strategy to battle the disease. Financial healthcare empowerment is going to play a significant role in the fight against cancer. If survival rates are going to improve, it is imperative that everyone is prepared from day one to deal with a shocking news that will affect all fronts of your life from physical and mental to psychological and financial implications.

Preparing for the High Cost of Care

Healthcare, in general, is a costly affair especially if you don’t have a good insurance. In this regard, it is important to squirrel money away even if it is only a small amount. If you are not familiar with the 50-30-20 (regular expenses, wants and savings) rule, you might need to think about it and adopt this strategy to maximize savings that you could put away. Even simple lifestyle changes (strict budgeting and ditching credit cards) already bring you a step closer towards financial independence.

Coping with Financial Stress

Unfortunately, while you are steadily creating your personal wealth, the devastating news of cancer can quickly knock you a few notches down. Resiliency to financial stress is key in getting through the illness. This means smarter management of assets and finding ways to get help for your treatments.Seeking the services of a financial counselor or social worker upon diagnosis is imperative to check out what resources are available to you.

Better Cancer Treatment Options but Rising Healthcare Costs

The good news is that treatment options for cancer are getting better as the years passed. The bad news is that these therapies are pricey and are likely to eat up the budgets of cancer patients. Although it might be difficult to come to terms with your diagnosis, it is important that you start researching treatment options immediately. Your healthcare insurance might not be enough to pay for treatment.

Dealing with Healthcare Finances, Loss of Income and Even Bankruptcy

There are several state and federal programs that offer financial support to individuals and families. Known as entitlements, they are directed at low-income groups, the elderly and disabled persons.Pharmaceutical patient assistance programs also exist to help with reimbursements, referrals for co-pay relief programs and discounted/free medications. You can also participate in paid clinical trials to help defray costs of treatments. Cancer organizations and general organizations can support treatment plans for patients.

Cancer is a devastating disease that has serious financial repercussions. It can cause physical and emotional stress as treatments and therapies can literally cost a fortune that in turn may in debt you or at worse, lead to bankruptcy. Being prepared financially for any disaster can mitigate these negative effects and taking charge of money matters is empowering.

Fight Financial Stress for Better Health

Receiving a diagnosis of cancer is immensely challenging; it can provoke a blend of anxiety, sadness, and fear, much of which can be allayed as we commence our treatment plan, working alongside a team of health professionals we trust. Sometimes, we can feel anxious or depressed while receiving treatment; we can feel tired and can grow impatient with the wait, eagerly wishing to simply get back to our day-to-day lives. The stress we feel can be compounded if we are also struggling financially. This post discusses the relationship between finances and health, suggesting ways to nip the problem in the bud.

Financial Stress and Mental Health

Studies on financial stress among particular groups (for instance, students burdened by debt) have found a greater risk of mental illness. Debt, low wages, or bankruptcy take their toll on our energy levels, but also affect our motivation, sleep, and lifestyle choices. Indeed, the relationship between stress and our finances is cyclical; the more burdened we feel, the more likely we are to make poor financial decisions (including spending money impulsively and getting deeper into debt). The more in debt we are, meanwhile, the more anxious or depressed we can feel. These states affect our ability to think clearly and formulate a strategic plan to rescue our finances.

Stress and Physical Health

Because our mental and physical health are interrelated, when we are in constant ‘fight or flight’ mode, we can make lifestyle decisions which hamper our physical health. For instance, binge eating and other eating disorders can be trigger by stress. Overeating, meanwhile, or indulging in processed and sugary foods, can lead to obesity, insulin resistance, and even Type 2 diabetes.

Seeking Financial Advice

If you are battling cancer and struggling to meet work and health needs simultaneously, do not be reticent to ask for help. Ask friends or family about a trusted accountant or financial assessor who can give you handy advice on how to save, consolidate, or refinance existing debt.

Accountants can point you in the right direction by suggesting that you automate savings. They can help you figure out which debts to pay first, and formulate a retirement plan. They can also advise you on small ways to save that can add up, such as the use of cashback cards, which can return you up to 2% of everything you purchase. This is not for everyone; there are options which can consolidate and reduce costs, but also others to help raise short term funds. Financial apps, meanwhile, can make it much easier to save money every month. Small steps such as this can make a big difference; they can mean having enough to pay someone to help you with housework or to have an occasional massage and other soothing treatments.

Stress Busting Strategies

Because the relationship between finances and our mental health is so interdependent, it is important to battle stress actively. Yoga and meditation are two activities which have been found to lower levels of stress hormone, cortisol, in numerous large-scale studies. In the end, stress reduction is a very personal pursuit; for some, experiences in Nature are a great source of relief. For others, hobbies such as art, music, or even gardening, do the trick. The key is to find something that resonates with you; the more mindful the activity, the better.

It is vital for patients, family, and friends to be aware of the effects stress can have on their physical and mental health; this is the first step towards putting an end to the stress-anxiety conundrum. By putting your finances in order and taking active steps to quell stress, you will find that neither has such a powerful hold on you as it may initially seem.


About the Author: Chrissy Fielding is a Content Manager and is working to build one of the best senior resource sites.

Qualifying for Disability Benefits with Cancer

Have you been diagnosed with cancer? If so, you might be eligible for financial aid. If so, the Social Security Administration (SSA) might be able to help. The SSA offers monthly financial resources for people with serious illnesses who are unable to work. While a cancer diagnosis does not automatically qualify, thousands of people with cancer are eligible for assistance.

Medically Qualifying for Disability

The SSA will refer to its own medical guide, known colloquially as the Blue Book, when you apply for disability benefits with cancer. The Blue Book contains details on exactly what medical results you’ll need for cancer to qualify. Cancer has different qualifying criteria depending on your specific diagnosis, so there’s no way to know if you’ll qualify without first consulting the Blue Book. Here are a couple of examples on how to qualify:

Prostate Cancer

Prostate cancer is one of the most commonly diagnosed forms of cancer, but the good news it’s highly treatable. Because of how receptive prostate cancer is to treatment, the criteria for qualification for prostate cancer are challenging to meet.

You will qualify for disability benefits with prostate cancer if your cancer has progressed or returned despite one round of anticancer therapy (usually three months’ hormonal therapy or chemotherapy will qualify), OR

Your cancer has spread to an internal organ, OR you have small-cell prostate cancer

Prostate cancer usually has to be Stage IV to qualify, but again, if your cancer has returned despite treatment you may still qualify at a lower stage.

Esophageal Cancer

Esophageal cancer is typically aggressive and challenging to treat, so you’ll actually qualify for Social Security disability benefits with just a diagnosis. Other forms of cancer that qualify with only a diagnosis include:

  • Acute Leukemia
  • Gallbladder cancer
  • Brain Cancer (malignant, not benign tumors)
  • Inflammatory Breast Cancer
  • Liver Cancer
  • Pancreatic Cancer
  • Salivary and Sinonasal Cancers
  • Thyroid Cancer

The entire Blue Book is available online, so you can review the cancer listings with your oncologist to determine if you’ll meet a listing. Typically, if you can meet any one of the following criteria you’ll qualify:

  1. Your cancer is inoperable or untreatable
  2. Your cancer is Stage IV
  3. Your cancer returned despite treatment

Starting Your Application

Applying for benefits is a tedious process, but fortunately you can complete the entire application from the comfort of your own home. Apply online at the SSA’s website—you can even save your progress to be completed at a later date.

If you’d prefer, you can also apply in person at your closest Social Security office. There are over 1,300 offices located across the country. You can schedule an appointment to apply in person by calling the SSA toll free at 1-800-772-1213.

Once approved, you can spend your monthly benefits on medical bills and upcoming treatments, childcare, housing for your family during treatment, food or utility bills, or any other daily living expenses.


Additional Resource:

Social Security Administration: https://www.ssa.gov

Social Security Disability Evaluation: https://www.ssa.gov/disability/professionals/bluebook/

Qualifying Criteria: https://www.disability-benefits-help.org/resources/medical-evidence

The Blue Book: https://www.ssa.gov/disability/professionals/bluebook/AdultListings.htm

Social Security Disability Application: https://www.ssa.gov/applyfordisability/

Social Security Offices Locator: https://secure.ssa.gov/ICON/main.jsp

Bills Social Security Can Cover: https://www.disability-benefits-help.org/blog/bills-social-security-disability-benefits-cover


This article was provided by Disability Benefits Help (www.disability-benefits-help.org), an independent resource dedicated to helping people across the country receive the disability benefits they need. For more information, feel free to reach out to our team at help@ssd-help.org.

Medical Bills, EOBs, and You

Medical bills are confusing, and often frightening. Even if it’s for something simple, the numbers add up fast, and to sometimes alarming levels. Add the Explanation of Benefits (EOB) documents you get from your insurer for the same clinical visit or hospital stay, and you can find yourself wondering how much you owe whom, and for what, exactly?

“Not A Bill”

This will be printed on all EOBs, and is the only sure way to tell which is an actual medical bill, and which is an EOB. However, an EOB can be confusing – other than that clear “Not A Bill” printed somewhere on the form.

This is one of the EOBs I got during my own cancer treatment. It’s for my lumpectomy, but the only way I’d know that is the dates on the form. The singular lack of information on what the EOB is for is one of the distinguishing characteristics of these forms, so knowing what the services were, and what your plan’s coverage is for those services, are important details. The numbers are indeed scary, given the Provider Charges of $50,231.25, and the Amount Paid of $0.00. Someone unfamiliar with EOB-ese might have a panic attack before getting to the important phrase “there is no liability on your part for these services” in Remark(s) Explanation 3.

“Statement of Account”

Here’s the summary bill from the hospital that covers the same services (my surgery), but this might only add to the potential for confusion.

The bill has slightly more detail than the insurer’s EOB, but not that much. It mostly seems to be to a series of magic incantations that take the starting amount – New Charges or Adjustments, $53,911.00 – and bring that down to an Amount Due of $50.00. My insurer paid $5,430.02, and there were Adjustments of $48,430.98, which leaves $50.00. On the one hand, hallelujah; on the other hand, what’s the story with that $48,430.98 “adjustment”?

If I didn’t have insurance, would I be on the hook for that whole $53,911.00? Probably, but it’s hard to know exactly. This is where the “chaos behind a veil of secrecy” that is healthcare pricing is most visible: hospital charges.

I learned a lesson from this bill, by the way: always ask for an itemized bill, not a summary bill. Ask for that during the admission process (if it’s a hospital), or at the medical office or testing facility during check-in.

Staying ahead of the healthcare cost curve

Here are my tips for figuring out your medical bills, and your EOBs, to ensure you get what you pay for, and only pay for what you get:

  • ALWAYS ask for an itemized bill, don’t just take a summary bill (the mistake I made with the billing for my own cancer surgery).

  • Review that bill, line by line. Make sure that it doesn’t have anything on it that you did NOT receive. Use CMS’s CPT code look-up tool to help you break down the blizzard of numbers. [CPT codes are the five digit service codes used by all medical providers; they’re in the column labeled Svc Code in the bill example above.]
  • Have your insurer’s Summary of Benefits documentation handy while you review the bill(s). That will be available on your insurer’s website.
  • Do not pay a bill until you get the EOB associated with those billed services.
  • Line up the EOB, and the bill, to make sure the dollars and the codes are correct.
  • Challenge any billed items that are for services you didn’t receive.
  • If services you received are listed as not covered by your insurer on your EOB, challenge that with your insurer’s customer service crew.

Yes, it takes work. And it’s a little crazy that the American healthcare system expects people, particularly sick people, to manage this blizzard of paper with scary dollar figures on it. But the only way to make sure you don’t pay more for your medical care than you should is to be proactive. It’s what empowered patients do.

Health Cost Literacy: “How much is that?”

The title of this post asks the $3.5 trillion-with-a-T question in American healthcare: how much is that? It often feels like healthcare is split into two camps, with one side working away feverishly to find more cures for life-threatening conditions like cancer and ALS, while the other side is working at an equally feverish pace to figure out just how many millions of dollars they can make of the latest breakthrough.

A recent example of this Tale of Two Healthcares was the roaring headlines about the first FDA-approved gene therapy, Kymriah (tisagenlecleucel), for leukemia. The business side of healthcare was ecstatic, pricing the drug at $475,000, which made Wall St. happy, and Novartis (the drug’s maker) ecstatic. The patient side of healthcare? Not so much.

Kymriah is an extreme example of healthcare pricing, but even trying to get a CT scan can turn into a trip down the rabbit hole, if you try to find out before the scan how much it will cost you. Asking “how much?” can seem like shouting down a well the first time you do it – you’ll hear an echo, because the person you’re asking will likely say “how much?” right back, in total shock at the question. However, asking questions is how we get answers, right?

Here are tips for asking “how much is that?” and getting meaningful answers:

  • Find out if your insurer has a cost-estimator tool. If so, use it. For everything required for your care. You’ll need the insurance billing code for the test, scan, or procedure (called the CPT code), so get that from your doctor’s billing office.
  • Use online price-check tools like Clear Health Costs or Fair Health Consumer to reality-check the pricing information you get from your insurer’s cost-estimator tool.
  • When your doctor refers you to a lab for testing, or an imaging center for scans, ask if they know what the cost is. They likely won’t at first, but the more of us who ask the question the more they’ll want to know the answer.
  • Call around to labs and imaging centers in your insurer’s network to ask about their cash price for the test or scan that’s been ordered for you. Depending on the cash price, you might be better off not using your insurance, and actually paying cash for the test or scan. If you have a high-deductible plan, you’ll need to assess which medical services are worth going off-the-books for if you haven’t yet met your annual deductible.

I know a lot about “how much is that?” because I was uninsured for five years after my own cancer treatment ended. I discovered that asking the question got me the answers I needed, and I could choose the providers that could give me a cash price for the mammograms and follow-up oncology services I needed. I’ve continued to use the simple question “how much is that?” every time a doctor has ordered tests or scans, because even with insurance, you’ll wind up with a bill for some part of the service.

If we all work together, asking “how much is that?” before receiving any medical service, we’ll start to shift the system, and the culture of healthcare. It takes a village, not just to raise a child, but also to change a status quo.

It’s your turn. Start asking.