The cost of chronic pain

Laura Kiesel
Laura Kiesel, Contributor

There is a saying that being poor is expensive. From personal experience, I know this to be true. But I think it also needs to be said that, especially in the United States, chronic illness can be quite expensive as well. In fact, there is a huge intersection between poverty and disability/illness. As with many intersections, it is a chicken-or-egg scenario, difficult to determine which is begetting which. But one thing is clear: there are often blind spots about these expenses in the medical community and how they can impact chronically ill people already struggling with finances.

Recently I attended a seminar on the topic and was immediately struck by the lack of attention to the expense of the nonpharmacological treatments being advised to take the place of opioids. I watched the doctors on the panel enthusiastically promote acupuncture, yoga, chiropractic care, biofeedback, massage, lidocaine patches, and TENS units. Yet, many of these treatments are not covered by most insurance plans and can be very expensive to pay for out of pocket. In the case of something like massage or acupuncture, it can cost well over $100 per visit. Since these therapies usually require multiple visits to achieve long-term outcomes, it can cost patients hundreds or thousands of dollars to cover the costs of such treatments. Considering that most people with disability live below the poverty level, many people with chronic pain may not be in a financial position to fund these alternative treatments — meaning they are basically unavailable to them.

Likewise, insurance doesn’t cover so many of the nutritional and herbal supplements and compounded medications that offer chronic illness patients a modicum of relief. Recently, my physiatrist wrote me a prescription for compounded low-dose naltrexone, or LDN, to treat my chronic pain. LDN is an opiate antagonist that has been demonstrated during limited clinical trials to reduce symptoms associated with many autoimmune diseases, including pain. However, I was informed by the pharmacy that my insurance plan would not cover it, and it was $80 for a month’s worth of daily dosages. I could not afford it, so I didn’t fill the prescription. Due to its expense, I couldn’t try a non-opioid medication that could have improved my function and quality of life.

Another example is one I face right now as someone with the connective tissue disorder Ehlers- Danlos syndrome. While there is no cure for EDS, I find that one thing that helps relieve some of my pain and minimize further injury is stabilizing my joints and soothing my spastic muscles. This requires generous use of splints, braces, and Kinesiology Therapeutic (or KT) Tape. None of these are covered by my insurance and can add up quickly — especially the KT Tape, which needs to be replaced weekly — straining my limited budget. Likewise, insurance also does not pay for the seat cushions that offer me better ergonomics at my home office so that my spine and hips don’t constantly lock up.

Insurance also didn’t cover the new bed I got last year that offers better back support, or the full-body pregnancy pillow (note: I am not pregnant) that I credit as only thing that has significantly improved my sleep in the past six months. Additionally, I am interested in obtaining some compression clothing, which has been indicated as having potential to improve mobility and pain in EDS patients. But because insurance won’t cover this either, it will require a financial investment on my part that is a huge gamble. If the clothing is not helpful, I’ve sunk in a significant amount of money I cannot recover. As a low-income individual, each choice is one I weigh heavily — the possible positive outcomes versus the potential for failure, and then the money wasted on it and what it could have otherwise gone to, such as rent or utilities.

I am not sure what can be done, except to pressure insurance plans to offer coverage of alternative treatments, and for more companies that offer such treatments or distribute supplements to offer sliding-scale or discounted rates to those of limited means. Hopefully, more pain clinics will start utilizing complementary methods to holistically treat pain symptoms, such as biofeedback and acupuncture, which will offer more incentives for insurance plans to cover them. This begins with awareness and needs to escalate to active advocacy to get us there.

Related Information: Navigating Health Insurance

Comments:

  1. Laura

    Ldn is very affordable from Belmar pharmacy in Colorado- try there. I pay $50 for a 3 month supply. Glad to see an article like this posted through Harvard . Another great resource on Chronic Pain is the book called unlearn your pain. There is a documentary trailer about the dr who wrote it called this might hurt . It’s fascinating . Neuroplasticity is a huge piece of chronic pain. PS if it helps my friend has EDS and was so so so sick and is thriving now.

  2. A M B

    Recently his diabetes had stopped responding to the oral meds he’d been taking for years and my brother had to switch to insulin injections. Guess what…..and this is an outrage…..insulin, at $1,500 per month, is NOT covered by insurance!!!! $18,000 per year. How’s that for a budget buster?

  3. E. O'Connorr

    “anecdotal”, not “antidotal” studies, you dolt. An anecdote is a story told. An antidote is a corrective remedy!

  4. Leslie McGovern

    I was assaulted at 26, critically disabled in my spine and both knees. I was on the job, so workers compensation is the system that handled my injuries and treatment. The pain I have endured is indescribable, often so bad I am screaming at the tiniest movement. It has continued for 38 years. The providers together saved my life and made life possible: an excellent neurosurgeon and orthopedist, cranial-sacral with acupuncture, homeopathy, gyrotonic, swimming, and walking (with crutches). The providers collaborated to get me relief and care. It would cost me $25,000 per year, and that money came mostly out of my pocket. I have always had to live a far simpler life in order to simply live, to pay for what I need to survive.

    The worst part is battling workers compensation, legally trying to get them to pay the bills they were ordered by the court to pay. In 1995, they stopped paying, and currently owe me more than $350,000 in medical bills and related expenses. (That includes no interest.) I am still involved in legal proceedings with them.

    In other countries, when one becomes or is disabled, one gets a salary from the government, a car, the medical care one needs that works for them in particular, housing, food, help at home.

    What will it take for us to create a new and better system? We know it can be done. We owe it to those vulnerable to have access to the best, and all types, of medical care. We all deserve and have the right to a healthy and happy and pain-free life.

  5. Tom Kocherhans

    I’m not sure how this will go over at Harvard but Johns Hopkins and The Mayo Clinic are on to maybe the best solution for chronic pain and better yet it’s not a drug and is non-invasive. It get’s about 80% efficacy with no side effects. I’m not kidding. too good to be true? The catch is getting insurance to pay for it just like was already mentioned numerous times. It was featured in The November 2016 Mayo Clinic Health Letter and more recently by The Foundation for Peripheral Neuropathy. The article was a collaboration between Johns Hopkins and The Mayo Clinic. https://www.foundationforpn.org/2016/12/09/scrambler-therapy-for-treating-neuropathic-pain/

  6. Paula Thompson

    Hoorayu, Lauren. Incredibly well-stated. Thoughtful. Sad, Something for every politician aty all levels, but especially federal, to read now!

  7. Al

    I, too, was surprised PT was not mentioned as it is covered by insurance (but in variable frequencies depending on specific insurance plans). As both a PT and chronic pain person myself, I know you have to be smart in how you use your visits. PTs can help with many of the techniques mentioned above, you can use your allowed visits spread through out the year, and begin again each year. I have learned many self care techniques from my PT that help me stretch out the time needed between visits. Yoga and Pilates help keep me aligned for longer periods and if I adhere to my weekly plan, I do well. I treat kids in my practice and some come in with pain for 1-2 years before someone suggests PT. We have been able to eradicate the pain completely in many cases. It should be a first line of treatment for sure. But like all practitioners, get one that is experienced in your diagnosis!

  8. Mary

    Thanks for the post Lauren. I know what you–and others here–mean. I have hemochromatosis and thus arthritis in most joints. This genetic disorder is degenerative. It’s expensive to treat chronic and worsening pain and stiffness, which led to my early retirement. I’ve tried physical therapy, osteopathy, tai chi, acupuncture, water exercise, ultrasound, massage, wraps and braces, surgeries, diclofenac, chiropractic, glucosamine chondritin, curcumin with black pepper or boswelliana.

    Insurance covered only joint surgery and physical therapy. The three things that work for me are PT (only 12 visits max per prescription), acupuncture from a well-trained acupuncturist (it’s an art as well as a science), and curcumin. The latter two are in my power to choose, but together cost $500 a month. PT I only get after surgery or an accident, for a limited time. In France for 6 months, on the other hand, I paid $35 weekly for PT without limits. Acupuncture and massage were covered under single-payer insurance. Mercy is possible. We have to organize to demand it!

  9. Mowindy

    I lived with Chronic pain…sciatica, carpal tunnel and plantar fasciitis. I lived with chronic pain for 15 years. I got to the point where I was getting worse and worse and I was not sure I could function in my job anymore. Getting a standing desk, changing my diet, taking regular breaks and doing yoga three times a week worked wonder. I went “mostly” paleo…still eat rice and corn chips occasionally. Fortunately, my work foot the bill for the standing desk and all the other stuff is essentially free. But nonetheless I completely agree that our current health care is nothing more then sick care. People need to wake up and realize our system is designed to only treat symptoms…go to the doctor and you will come home with drugs that have more side effects than the warning labels can print. I pray everyday we will collectively make better choices and our doctors will help us make better choices instead of taking out their prescription pads. Yes…we must educated ourselves and others. There is so much information out there…just need to tap into it.

  10. Hadley Dettmer

    I am a wealthy woman, age 48, mother of 4 and, blessedly, wife of a lawyer. I also happen to have scoliosis of the spine and have spent the past 13 years working with Iyengar yoga instructors, pilates instructors, personal trainers, an osteopathic doctor who specializes in cranial/sacrum manipulation but who has really worked a lot on my spine too, and a weekly massage therapist. Because I have had so much support and learned from these teachers what exercises and movements were best to unwind my back, I have also been able to create my own daily routine to accompany my 3-4 days/week of swimming laps and doing yoga at our club, where there is a warm outdoor pool. I spend 2-3 hours/day on my spine, generally speaking.

    I have made incredible progress. In fact, I dare say that I am practically straight. My energy has gone through the rough, my thinking is much clearer, my entire organ system (lungs, heart, intestines– my large intestine was wrapped around my right hip to begin with) is aligned and in full working condition.

    I write this to agree with you and to support your complaint. I think daily how I could help change the focus of our medical system because nothing an allopathic doctor had to offer me was something that could have helped me heal. A spine specialist took an x-ray and told me to start with a pilates instructor, but that was it.

    I am on the other end of a long EXPENSIVE, TIME-CONSUMING, unwinding. I am not deformed (what I was told I was when I was 12, my bones are all symmetrical and I work well.) But, I wanted to be a resource, if you need one, to help sort this out.

  11. Erik

    One interesting thing for me is the notion some people have that poor people deserve to be in pain. That somehow they have squandered their money [an ugly stereotype in itself], and so they deserve to live in pain if they cannot now afford treatment.

    But what if, as the author defends, pain augments — or even causes — poverty by preventing access to good-paying jobs and costing not only in the material costs of its treatment, but in the opportunity cost of the treatment, too?

    Does anyone deserve that?

    I want to understand the value system which includes that belief.

  12. Hong

    I can’t speak for the MD for proper training, but I agree the whole system need to be changed. I am an Acupuncturist and I can tell you that 90% of the Acupuncturist that you see don’t have the proper knowledge of Traditional Chinese medicine. They are use to think needle where the pains are that is not the way to be done. I will step on many people’s toes here. But traditional Chinese medicine need a reform as well. We have to think like a traditional practictionor instead of thinking like an MD and use needles and herbs.

  13. Steve T

    I always find it interesting that the Harvard Health medical blogs rarely if ever mentions physical therapy as an “alternative” treatment. Is it because big pharma, medical equipment companies and hospital systems cannot make big profits on proven treatments.

    The best treatments for musculoskeletal disorders (MSD) is physical therapy. That is the first and best treatment option. All professional, collegiate and Olympic athletes receive immediate and ongoing physical therapy treatments to get them back to health. Our Navy SEALs go directly to a physical therapist when injured. The problem is when most physicians see a patient with a MSD they medicate, promote rest and over test with often unnecessary and expensive scans. That runs up the medical costs, delays recovery and adds multiple secondary issues to the initial problem.

    Chiropractic, acupuncture and massage have not been scientifically proven through quality peer reviewed journals. They are all “proven” treatments by opinion and antidotal studies.

    There are many conditions that do require medication to manage chronic systemic diseases and syndromes however nearly all chronic conditions are helped and managed with quality physical therapy.

    For those who have had a negative experience or outcome should seek out a physical therapist that has the experience and knowledge to help manage their issue. If I have a poor outcome with a dentist- I find a dentist that can help me. I do not leave and say all dentistry is no good. I know I need to take care on my teeth just like I need to take care of my body with physical therapy.

    • Laura Kiesel

      Steve,

      I find that most patients who suffer from chronic pain have already gone through countless rounds of physical therapy and tried numerous physical therapists–as have I. I find it is one of the first courses of actions the docs recommend and often the one they insist on trying again and again even when and if it fails. I even tried a special 6.5-week intensive (all day for two days a week) PT-focused program for chronic pain patients; while it did help somewhat (esp some of the lessons in body mechanics), I am still in a ton of pain that requires of all of the above modalities I list in this posting. Here’s my post on that:

      https://www.health.harvard.edu/blog/lessons-from-a-chronic-pain-management-program-2017091312353

      It should be noted though that PT also has its limits in insurance; for many, it is much more limited than people realize. If you have chronic pain, insurers tend to stop covering at a certain point after only a handful or a dozen visits, which can fall very short of what someone needs. Even for the aforementioned intensive program I partook in, insurance cut me off 1.5 week early, so I missed the last three days. And not everyone benefits from PT. I have Ehlers Danlos Syndrome, and before I was diagnosed, many of the aggressive stretching and strengthening exercises required of me was actually exacerbating my connective tissue damage and therefore, my pain.

    • Maureen Green

      This was the information I needed to hear. Thank you. Now I know which direction to take. Thank you so much!

  14. Jory Pradjinski

    In my comment it was supposed to read:

    ,,, add in the lack of ,,,,,

  15. Jory Pradjinski

    The burden also rests on the medical schools who are not properly training doctors to treat pain. The blame for America’s chronic pain crisis is spread wider than the average person understands, or it told by the media. Medical schools, the medical assocation itself, health insurance companies, big pharma and the government (for example the CDC’s completely irresponsible Opioid “Guidelines”).

    Wellness is not taught to our medical professionals. Proper nutrition, body weight are not discussed in pain management. Then add in the jack off discussion about the potential health benefits of alternative treatments: acupuncture, chiropractic, massage, myofascial release, meditation, yoga, dry needling, muscle toning just to came a few.

    America is in a chronic pain crisis, and this crisis is fueled by stigmas of discussing pain, illness and mental health conditions. The solution will require changes throughout our healthcare (actually a sickness treatment) system.

    Yours in hope

  16. Cathey Thomas

    I’ve been on nothing but LDN for my Multiple Sclerosis for over 13 years and I’m still doing really well. LDN has also helped me a LOT with chronic pain (I have severe spinal stenosis at multiple levels as well as various painful orthopedic issues, bilaterally torn rotator cuffs, etc., etc.), so any help with pain is much appreciated.

    The only real difficulty I ever ran into with LDN was in finding a doctor to prescribe it, especially back in 2005….but I found somebody. These days it’s much easier; my new neurologist prescribes it for several patients and is enthusiastic about it, and my new family doctor at least already knew about it.

    I’ve never experienced any negative side effects, and I’ve never had any contraindications to taking it since I’ve never been able to tolerate opiates anyway.

    I just wish more doctors knew about it.

    https://ldnformultiplesclerosis.blogspot.com/

  17. Natasha

    I am a fibromiyalgia patient and suffering more than 10 years. Now I am using TENS unit but I am still not hundred percent sure that this device really helps me or not. I am feeling better when I use it, but it is something like a temporary solution to constant problem.

    I used this one if you are interested in.

    https://techcaremassager.com/collections/frontpage/products/plus-tens-unit-1

  18. Samantha Damm

    As a self-employed, single parent, I’ve spent 30-50% of my earned income each year on massage therapy, chiropractic, acupuncture, naturalpaths, braces, creams, TENS units, herbal supplements, cushions, Sketcher shoes and even prescription from compounding pharmacies to function with constant pain of EDS & Crohn’s. I’d receive a client’s payment, cash it and use the money toward keeping my pain at a level, so I could continue working. Eventually, the pain got so high, I could no longer work and now I’m using my retirement funds to survive. I wonder what I’ll do when the funds run out if I can’t work, but I hold onto hope having an electronic stimulator implant soon will bring the pain lower, so I can get back in the game:-)