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The Hidden Costs Of Chronic Illnesses And Disabilities


People with chronic or ongoing health conditions—which affect six out of ten of us in the United States, according to the Centers for Disease Control and Prevention—may appear healthy at first glance. Most chronic conditions are invisible to average observers.
But the health care costs associated with these conditions are no joke. These costs are often invisible too, even to patients; that is, until the bill arrives and you’re facing hundreds of dollars in surprise charges for a blood test or a specialist outside your insurance network.
Maybe you’ve just been diagnosed with a chronic condition, or you’re a longtime patient working to get your medical expenses under control. Here are some major charges to look out for, and a few ways to save—including picking an insurance plan that works best for you.


Got a chronic illness? You’re probably filling multiple prescriptions. How much you’re paying depends in part on your insurance coverage, if you have it. Health insurance plans have different “tiers” or classes for medicines, from Tier 1 (least expensive) to Tier 4 (most expensive). This can explain baffling differences in costs for two similar-sounding drugs.
Some plans charge two separate deductibles—the amount you pay before your insurance kicks in—for prescriptions and doctor visits. The state you live in matters too, since medication coverage benefits can differ from state to state. 
If a drug or treatment is new to the market, or if it’s “off-label” or not yet approved for your diagnosis, insurance plans might not cover it. And when care providers combine or alter medications to treat your specific condition, a process known as “compounding” medications, plans will be reluctant to cover the meds since compounding isn’t FDA approved.
But some of the highest price hikes come from specialty medications, which are often the same ones designed for chronic illnesses. 
Insulin, an essential medicine for people with diabetes, is a prime example. A Health Care Cost Institute study found the price of insulin just about doubled in four years from 2012-16. Every brand of insulin got pricier. Insulin alone accounted for 47% (almost half!) of an average diabetes patient’s total annual health expenses.
Saving on medication
There are a few tricks to save money on prescriptions. Many drugs come in a generic version that works exactly the same as the brand-name version at a much better price point. Ask your provider or pharmacist if a generic drug can replace any brand names you’re prescribed.
Drugs that are newer to the market won’t be available in a generic form yet. You may be able to join a clinical trial for a brand new medicine (under your doctor’s supervision, of course) and get the product for free.
Even pharmaceutical companies are waking up to medicine’s inaccessible prices. Resources like the Medicine Assistance Tool (MAT) help patients find low-cost options. The MAT includes a directory of companies committed to price transparency and a list of their prescriptions. 
You can also reach out directly to the pharmaceutical company that makes the drug and see if they have a patient assistance program—four major insulin manufacturers do.
Specialist visits
While insurance plans cover visits to primary care doctors, plans are less likely to pay for visits to specialists—doctors with advanced training in specific fields like neurology and endocrinology. And those of us with chronic conditions see a lot of specialists.
Massage therapists, acupuncturists, chiropractors, and other nontraditional practitioners who help people with chronic pain are also considered specialists, meaning insurance plans won’t always cover their services. A single visit to a massage therapist may cost $100 or more. Since you’ll usually need multiple visits to get results, the bills add up quickly.
That’s not counting the specialist appointments you can rack up just waiting to get diagnosed. People with autoimmune conditions where the immune system attacks itself, for instance, sometimes struggle to get a diagnosis because of the tricky nature of their disease.
Saving on specialist visits
Ask your primary care provider (PCP) if they can refer you to an in-network specialist. If your plan doesn’t cover practitioners in the specialty you need, some insurance plans will give you the in-network rate if you see an out-of-network specialist instead.
Insurance may also pay for an uncovered treatment, like acupuncture, if you can prove it’s medically necessary. This might require a prescription or note from your PCP to explain the necessity.
Balance billing

When you see a care provider who isn’t covered by your insurance, or receive a treatment that’s not covered (even from an in-network provider), you’re stuck with charges for the balance—hence the name “balance billing.”
Unlike deductibles, which patients can plan for, balance bills seemingly come out of nowhere. I was surprised by a balance bill for a brief hospital consult with an out-of-network doctor; the hospital was in-network, but the provider wasn’t. Like many patients in similar situations, I didn’t have the option to choose someone on my plan.
Saving on balance billing
Good news: the Pew Research Center says 25 states have either partial or full laws against surprise balance billing. See if your state is one of them on the map here.
If you do get a balance bill, you may be able to appeal for your insurance to cover some of the costs. First, though, make sure the bill is actually for treatment you received since billing departments do make mistakes.
This cost shows up in different ways. There’s the price of transportation itself, which adds up after traveling to multiple appointments weekly or monthly. I took a lot of subway rides seeing specialists all over New York City and sometimes sprung for a cab if the office was far from public transit.
Then there are the long-term effects of missed appointments if you don’t have reliable transportation. Many of these appointments monitor treatment and catch symptoms early; without them, you may end up in a much pricier ambulance to the ER.
Saving on transportation
Skipping appointments is a bad idea. Your provider may be open to remote video check-ins, especially with the ongoing threat of COVID-19 in crowded medical facilities. 
But if your treatment needs to be in-person, see if your care facility can provide non-emergency medical transportation (NEMT) which is usually free to patients and covered by insurance.
Aids, implants, and devices

Vision, hearing, and mobility aids aren’t cheap. Some (not all) insurance plans provide partial or full coverage for Durable Medical Equipment (DME), such as wheelchairs and canes, as long as the equipment is deemed medically necessary.
There’s a limit to what plans will cover; most only reimburse for new wheelchairs once every five years, for example. And insurance generally won’t pay for equipment upgrades that aren’t medically essential. 
Disposable medical supplies often come with steep charges because they need to be replaced on a regular basis. For example, an EpiPen—the quickest way for people with allergies to self-administer life-saving medication during an allergy attack—gets its infamously high price from the injector, not the medication itself. Patients are often looking at a $400-plus charge for two EpiPens, even after insurance pays its share.
Blood tests and other diagnostic tools are a normal part of chronic illness for many patients. Their hidden costs usually don’t come from the doctor’s office but from the lab the doctor uses, which may be outside your insurance network. Under the Affordable Care Act, insurance policies have gotten pickier about the tests they’ll cover.
More involved procedures like CAT scans and MRIs may need a doctor’s pre-authorization before insurance will pay for them.
Saving on testing
If you get a chance, ask whether a test can be sent to an in-network lab for analysis, or if a procedure is pre-authorized. Your provider may prefer a lab out of your network, but if they can explain to the insurer why they’re choosing this lab, insurance may offer coverage.
If you’re preparing for a major procedure you can find out if the medical professionals involved will accept your insurance, since specialists will be called in for the job.
Limited work hours
Chronic health conditions take their toll when you’re working too. Pain and other symptoms may limit your ability to work full-time or get in the way of career advancement. To make things worse, appointments and procedures can’t always be scheduled around work hours.
Less work means less money, naturally – and if you’re in a high-stress or physically demanding career, illness might make you reevaluate your plans.
Multiple health conditions

One of the worst parts of having a chronic illness is that you don’t always have just one. Coexisting or “comorbid” conditions are common, and each new diagnosis raises your overall medical costs. A study by scientists in Singapore and Australia found patients’ out-of-pocket expenses grew 5.2 times higher with two chronic conditions, and over 10 times higher with a third condition.
Why are costs so high? Providers tend to treat each illness on its own rather than tackling them all at once. Two diagnoses may mean two medication regimens and two specialists.
Changes in coverage
Lapses in insurance coverage add up, even if they only last for a few weeks. And even if you are covered, insurance plans might change what they’ll pay for. Patients may show up at the pharmacy only to learn their policy no longer covers the medication.
Insurance deductibles
As you probably know, insurance deductibles can be a headache. A high-deductible health plan seems to make sense at first glance; if you’re visiting doctors frequently, you’ll hit your deductible more quickly and insurance will start covering costs. But it can be an expensive road to get there.
Saving on deductibles
When you’re shopping for a health plan (more on that later), start by estimating, as best you can, the total anticipated cost of your health care for the coming year. What meds are you taking, how often, and how much do they generally cost? How many times do you visit the doctor each year, and what co-pay are you charged?
Chronic conditions can be unpredictable, so you won’t be able to guess your future costs perfectly. But knowing your biggest and most frequent health care expenses will help you decide if a high-deductible plan makes sense. You may save on total costs by purchasing a plan with a high premium (the amount you pay monthly) and a lower deductible.
Picking the right insurance

All insurance shoppers should read the fine print before they pick a policy, but for people with chronic illnesses, this research is especially crucial. The last thing you want is to learn your plan doesn’t have enough coverage for the practitioners or medications you need. A seemingly inexpensive policy can become a pricey one very quickly – or one that discourages you from seeking care because of the cost.
Most plans will have a summary of the benefits for potential buyers to read on their website. Here’s what to look for in the paperwork:
Are your regular doctors and specialists in the plan’s provider network? If you frequent a hospital or treatment center, are they in-network as well?
Are your prescriptions covered? Do you need permission from the insurer before they’ll pay for certain prescriptions?
If you use medical equipment, is it covered? How often will the plan pay for replacements?
Which medical procedures are covered, and how much coverage is offered? Is the amount enough if you need procedures regularly?
Will the plan accept applicants with pre-existing conditions?
You’re better off with a plan that covers most of the providers and supplies you need, even if the policy comes with a high sticker price.
How to find a new plan
Disability insurance
Disability insurance safeguards some of your monthly income if illness or injury keeps you from working. I’d recommend it for people whose chronic illnesses may restrict their ability to work in the future, especially if your income supports others. Most plans pay about 60% of your regular earnings a month, which can make a huge difference.
Breeze is a great one-stop-shop for comparing disability insurance policies from multiple carriers. You can opt for short-term or long-term coverage, and you can choose the length of your waiting period (how long you want to delay benefits if necessary). Coverage amounts range widely – you can opt for just $500 or go up to $20,000. With Breeze, everything is online and takes just 15 minutes to complete.
Policygenius is another option for disability insurance comparison shopping. The independent site gives you multiple quotes from reputable insurance companies, letting you pick what meets your needs. Representatives answer questions online through a chat feature.
One of the best parts of Policygenius is the sheer variety of plans—you can shop for disability insurance and life insurance, as well as standard health insurance. The cost and coverage amounts vary, but the site itself is always free to use.
Life insurance
It’s smart for everyone to have life insurance, whether you have a chronic medical condition or not. In the case of your death, it can do wonders to help financially support your family. If you don’t have it and have dependents, I strongly recommend that you open a policy.
If you do have an invisible illness, Bestow has one of the most flexible term life insurance policies out there.
Unlike most other carriers, Bestow doesn’t require a medical exam. Since exams sometimes disqualify people with health issues from purchasing life insurance – or label them as high-risk, leading to much higher premiums—a no-exam policy can be the easiest path to life insurance for the chronically ill. You will answer a few questions about your health in their initial questionnaire.
Coverage amounts range from $50,000 to $1,000,000.
Health insurance
If you have a chronic illness or disability and don’t have health insurance, you are probably paying medical bills out of the nose. While not every policy is made the same, there is no denying that it can help you manage the costs associated with your illness or disability. It’s therefore worthwhile to check out health insurance options where you live.
Invisible illnesses are far from invisible in your bank account. Once you know what the hidden costs are, you can look out for them—and potentially save money on treatment for chronic conditions in the long term. 
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