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For many brain injury or spinal cord injury (SCI) survivors, the pain of a sudden and unwelcome transition into a new life is just the beginning. Spinal cord injuries require comprehensive, ongoing treatment. Indeed, it is this treatment may mean the difference between living and dying; surviving and thriving.

According to the Dana and Christopher Reeve Foundation, the cost of a spinal cord injury in the first year after the injury ranges from about $300,000 to just over $1,000,000. The annual costs continue from there, falling slightly to between about $42,000 and as much as $200,000, depending upon the injury, your specific treatment protocols, your prognosis, and other individual factors.

Knowing what sorts of medical expenses you might have to cover can help you plan for the expense. The good news is that health insurance typically covers a significant portion of your costs, so you may end up paying very little out of pocket.

Types of Medical Expenses Associated With Spinal Cord Injuries

There's no single cost figure that applies to all spinal cord injuries, just as there is no treatment plan that works for every SCI survivor. Generally speaking, the higher in your spinal cord your injuries are, the more you can expect to pay in health care costs.

Acute and Trauma Care

The most expensive portion of the spinal cord recovery journey typically comes in the months immediately following the injury. Your medical team will spare no cost trying to stabilize you and set you on a course for a productive life with maximized healing.

Some of these early costs include:

  • Surgeries, such as surgery to remove lesions, swelling, or objects embedded in your spinal cord, as well as spinal fusions. Because spinal surgery is complex and requires incredible skill, it's among the most expensive surgeries you can undergo. 
  • Emergency care, including transportation in an ambulance or helicopter. 
  • Intensive care unit stays, which provides round-the-clock care and which is therefore typically the most expensive wing of the hospital. 
  • Medications to stabilize you, prevent infections, and address issues as they arise; the newest and most effective medications are often among the priciest. 
  • Medical assessments to determine proper treatment and prognosis. You will be relying on the expertise of specialists in their field, and this expertise rarely comes cheap. 

Hospital Stays

After you are stabilized, you may remain at a trauma center or be transferred to a rehabilitation hospital. Either way, the cost of a long hospital stay can quickly add up. Spinal cord injury survivors spend an average of 15 days at a hospital or trauma center, followed by an average of 44 days in a rehabilitation facility or hospital. You'll be paying for 24/7 care, equipment, meals, and the expertise of the providers who treat you. This can quickly add up to a significant expense.

Rehabilitation Centers

You will likely need outpatient rehabilitation for months, or even years, after your initial discharge from a rehabilitation hospital. Depending upon the services the facility you have chosen offers, this may include the costs of group support, access to resources such as indoor pools, and ongoing treatment and evaluation.

Medication

You will likely need a variety of medications. This can include experimental drugs to treat symptoms as they arise, as well as more routine medications such as antibiotics to prevent infections, pain medications, psychiatric drugs, drugs to prevent blood clots, and a host of other prescriptions. Newer drugs are typically more expensive, particularly if they are not available in generic formulations.

Physical, Occupational, and Exercise Therapy

Physical therapy helps your body learn to work around your injuries. It's not just practice, though. Over time, physical therapy can help you grow new neural cells, potentially enabling your spinal cord to regain some functioning. This approach to treatment also helps you avoid injuries related to disuses, such as chronic pain, muscle atrophy, and blood clots. Ongoing physical therapy will further enable you to feel more confident moving in your altered body and working with any assistive equipment, such as a wheelchair.

Put simply, ongoing physical therapy can mean the difference between significant recovery and no recovery at all. Its price reflects its value, and treatment with the best physical, occupational, and exercise therapists can easily cost several thousand dollars each month—more at the beginning of treatment.

Psychotherapy

Psychotherapy does not mean you are “crazy.” It means you are a normal person adjusting to extremely difficult and abnormal circumstances. Psychotherapy is a must for spinal cord injury survivors. It will help you adopt coping skills to better manage your symptoms, and may also help your family learn to better support you. Therapy isn't just for your brain, either. Research consistently shows that sound mental health reduces chronic pain and speeds recovery time, so therapy may be the single best thing you do for your long-term health. Expect to spend at least $100 per week on psychotherapy—more if you need more frequent sessions.

Equipment

Almost all spinal cord injury survivors need some equipment to help them navigate the world. This may be as simple as a crutch in the case of less severe injuries, but more typically means the use of a wheelchair. You may also need assistive speaking or typing devices, a colostomy bag, a respirator, and other tools to help you remain safe and comfortable. Most equipment is a one-time purchase, but you'll likely have to continue investing small sums into upgrades and repairs for the rest of your life.

Home Modifications

Few homes come ready-made to suit the needs of spinal cord injury survivors. Scaling steps can be difficult or impossible. Small door frames may not allow you wheelchair access. Depending on your home's layout and the specific of your injuries, you might need to install a ramp, lift, or elevator, remove small passageways, widen door ways, and even take small actions such as evening out uneven floors. This can cost several thousand dollars.

In-Home Aides

Many spinal cord injury survivors feel self-conscious about hiring someone to tend to their medical and physical needs day after day. Perhaps you hope to do it yourself or rely on your family. Think again. An in-home aide can provide your family with a much-needed break. It also allows your loved ones to focus on your relationship rather than providing care, making it easy to continue having equal relationships similar to those you had before your injuries. Depending upon what kind of care you need, you may spend anywhere from a few hundred to several thousand dollars each month.

Continuing Care

Spinal cord injuries are unpredictable. You might find yourself getting steadily better, only to suffer an infection or fall several years into your recovery journey. Ongoing care is unavoidable as you work toward recovery. You may need to return to the hospital, undergo future surgeries, consult with experts about specific symptoms, or return to psychotherapy if you become depressed or anxious. Don't be disappointed by these setbacks. They are a normal, natural part of the recovery journey. Prompt and effective care can minimize these setbacks' effect on your life while helping you continually move toward recovery.

Issue-Specific Care

Spinal cord injuries can raise a number of health issues. If you plan to start a family, you might struggle with sexuality or fertility and need to consult with a fertility doctor.

What Will Insurance Cover?

The specifics of what your insurance policy will cover are heavily dependent on the policy itself. Most insurance policies give priority to certain “preferred providers,” so you should ensure your providers are on this list before pursuing expensive care. If you need treatment from a specific provider who is uncovered, an insurance lawyer may be able to help you lobby for care. Alternatively, you might switch plans at the next opportunity.

Insurers typically only cover that which is medically necessary, though this does usually include second opinions. It won't include supplemental care, alternative medicine, or treatments your provider has not recommended. It might not include experimental treatments, unless there is no treatment alternative and the data for the experimental protocol is strong.

A decade ago, much of what is routinely covered was not. But the Affordable Care Act and other insurance regulations have offered spinal cord injury survivors access to more comprehensive care.

Some of the most important regulations to know include:

  • An insurance company cannot decline you for a pre-existing condition, or refuse to cover treatment associated with that condition. This means that if you don't have insurance, you can still apply for it even after your injury. 
  • Your insurer has to cover both mental and physical health care. 
  • Treatment such as physical therapy and in-home aides are often covered. 
  • There are no lifetime caps on benefits, so a high medical bill today doesn't necessarily mean you'll be struggling to cover your expenses tomorrow. 
  • You might be required to pay a deductible, copay, or both, which means that some expenses will continue to come out of your own pocket. 
  • Insurers are not required to cover any fertility care, but some offer limited coverage. It is very rare for an insurer to cover in vitro fertilization. 

Resources for Covering Additional Expenses

If your insurance denies your claim, your first call should be to a lawyer. The law is useless if it is not enforced, so if you think your insurer is breaking the law, seek help. Some spinal cord injury survivors also seek supplemental plans or join concierge health services to get access to personalized care.

If you are struggling to pay for the costs associated with your injury, you have a variety of options. Those include:

  • Fundraisers through private and public organizations. Many charities sponsor events for spinal cord and other catastrophic injury survivors. Your employer might also help by, for example, sponsoring a walk-a-thon or other awareness campaign.
  • Crowd sourced fundraising. This increasingly popular option allows you to raise money with no more than a computer. Make sure you carefully check the fundraising site's policies before signing up.
  • Fundraising organizations. These organizations work with you to develop a comprehensive plan—including crowd sourcing and events-- to raise the funds necessary to cover your expenses.
  • Grants. The government, charities, and a range of private organizations offer grants to cover common expenses, especially those not typically covered by insurance.
  • Loans. Save this option only for when you've exhausted all other options, and only take out as much as you can afford to repay.