Civil Rights Case Gives Hope to Pain Patients

By Richard Dobson, MD, Guest Columnist

People with chronic disabling pain frequently complain that doctors discharge them from their practice because of the medications they take. Sometimes doctors refuse to accept patients who are taking opioid pain medications, even though the medications treat a legitimate medical condition.

There may be hope that such actions will be considered violations of the civil rights of patients.

This week the Civil Rights Division of the Department of Justice (DOJ) signed a formal agreement with Selma Medical Associates, a large primary care practice in Virginia, that may open the door for people with chronic pain to regain their full access to medical care.

Selma Medical refused to schedule a new patient appointment for a man who was taking the addiction treatment drug Suboxone. He filed a civil rights complaint asserting that his rights were violated because has a disability.

According to the complaint, Selma Medical “regularly turns away prospective new patients who are treated with narcotic controlled substances such as Suboxone.”

The DOJ and Selma Medical settled the complaint out-of-court. The full agreement can be read here.

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In essence, Selma Medical agreed to stop discriminating on the basis of disability, including opioid use disorder (OUD). The settlement identifies several specific ways that Selma Medical was violating the civil rights of people with disabilities.

“By refusing to accept the Complainant for a new family practice appointment solely because he takes Suboxone, Selma Medical discriminated against him by denying him the full and equal enjoyment of the goods, services, facilities, privileges, advantages, or accommodations of Selma Medical.

By turning away the Complainant and other prospective patients who are treated with narcotic controlled substances, including Suboxone, Selma Medical imposed eligibility criteria that screen out or tend to screen out individuals with OUD.

Further, Selma Medical failed to make reasonable modifications to policies, practices, or procedures, when such modifications are necessary to afford such goods, services, facilities, privileges, advantages, or accommodations to individuals with disabilities.”

In the agreement, Selma Medical agreed to stop discriminating now and in the future. The staff and administration are also required to undergo intensive training on the implementation of the Americans With Disabilities Act (ADA).

Importantly for pain patients, the agreement applies to people taking “narcotic medications” for any reason and is not limited to people who are taking Suboxone for OUD. The agreement does seem to imply that people taking opioid medications also have their civil rights violated if they are refused medical care on the basis of their diagnosis and their use of opioids.

A former staff attorney in the DOJ’s Civil Rights Division agrees.  

“This formal settlement agreement from DOJ affirms that discrimination in access to medical treatment based solely on an individual’s use of a particular medication — in this case, a narcotic controlled substance — may violate the law,” says Kate Nicholson, a pain patient and civil rights attorney who helped draft federal regulations under the ADA.

Anyone who has chronic pain and who is discharged from a practice or refused admission to a medical practice should let the medical staff know that this is a violation of the ADA. Show them the agreement between Selma Medical and the DOJ. Then if the medical practice still refuses care, file a formal complaint with the Office of Civil Rights. Instructions on filing can be found here.

As part of the settlement agreement, Selma Medical had to pay $30,000 to the complainant for “the discrimination and the harm he has endured, including, but not limited to, emotional distress and pain and suffering.” Selma Medical also had to pay a civil penalty of $10,000.

It seems to me that the substance of this agreement gives real hope to the chronic pain community that discrimination based on disability, even if the disability is based on pain, is illegal and violates their civil rights.

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Richard Dobson, MD, worked as a physician in the Rochester, New York area for over 30 years, treating and rehabilitating people suffering from chronic pain, mostly as the result of work or motor vehicle accidents.  He is now retired.  

The information in this column should not be considered as professional medical advice, diagnosis or treatment. It is for informational purposes only and represents the author’s opinions alone. It does not inherently express or reflect the views, opinions and/or positions of Pain News Network.

Taking Control of My Disability Case

By Mia Maysack, PNN Columnist

This stack of papers may not look like much, but it is my medically documented life beginning in the year 2002.

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I personally highlighted them, so I can confidently report that the words “headache” and “migraine” are mentioned hundreds of times throughout.

I've been in the process of pursuing Social Security disability for about three years, which is not uncommon. Many have abused the system and there's also a high volume of claims being submitted and reviewed every day.

It took me a long time to even get to the point of filing for disability.

What does filing say about me as a person? Will I be judged? They probably won't even believe it. There are so many out there that need and deserve this more than me.

I still have those thoughts from time-to-time, even though my chronic migraines and cluster headaches have impacted every aspect of my life in a negative way – including employment.

I do not take the collection of denial letters I have received personally, as they've got to do what they can to weed out whoever isn't entirely legitimate. I know that I am, so I'll keep fighting.   

In recent months, another denial letter came. They acknowledged I am unwell but still deem me “well enough.” I decide to appeal immediately, as they only give you 60 days to do so. I also hired legal representation to help me through the process.

When I called them to check on the progress of my case, their tone felt dismissive. I would get put on hold before finishing a sentence or receive roundabout answers to basic questions. I’d also be reminded -- as if I wasn't already aware -- that disability court dates are scheduling 23 months from now.

I don't mind waiting, considering the fact I have no choice.  But it seemed as though I was being slow walked on a hamster wheel and not moving forward at all. This week I chose to contact Social Security directly and they informed me that, according to their records, there is no appeal on file for me at this time.

What does this mean, exactly?  In short, my legal representatives have not been covering their responsibilities to me as their client. I've been scraping by with 26 cents to my name while relying on their word, which I've now been convinced means next to nothing. 

I asked a Social Security representative what my next steps should be to take control and clean up this mess. He instructed me to visit their website and file an online appeal, which has since been done. Since I can’t account for where exactly all the paperwork I've been sending to my "help" has been going, I plan to stop in my local Social Security office to hand my stack of medical records directly to them.

We are our own best advocates, but how do I advocate for myself?  This is one way. I am the one who knows and understands the extent of how this debilitation has derailed just about every goal or dream I've set my sights on. But I won’t let that define me. I am more than my illness and won't allow my case to be dismissed.

I'm aware that representing myself may very well set this process back even further, but I've come to the realization that if we want something done right, we've got to make it happen ourselves.

At first, I felt disheartened because this seems like a full-time job in itself. But when others do not hold up their end, I now see this as an opportunity to raise awareness, address policy, educate and ultimately claim ownership of my own life. Now and in the future.

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Mia Maysack lives with chronic migraine, cluster headaches and fibromyalgia. Mia is the founder of Keepin’ Our Heads Up, a Facebook advocacy and support group, and Peace & Love, a wellness and life coaching practice for the chronically ill.

The information in this column should not be considered as professional medical advice, diagnosis or treatment. It is for informational purposes only and represents the author’s opinions alone. It does not inherently express or reflect the views, opinions and/or positions of Pain News Network.

Should You Tell an Employer About Your Chronic Pain?

By Lana Barhum, Columnist

Telling your boss or a potential employer about your chronic pain condition can be slippery slope. 

If you disclose it, you may wind up dealing with judgments and misguided attitudes from supervisors and coworkers about the extent of your chronic pain. On the other hand, if you don’t disclose it, you may miss out on accommodations you need and are entitled to.

There is always going to be risk when you disclose. And it is hard to know whether an employer will be accommodating or treat you unfairly.   

You do have rights as an employee and a person living with chronic pain. You should know what they are before you decide whether to disclose.

You Do Not Have to Be Visibly Disabled

Many people who live with chronic pain don’t consider themselves “disabled.”  Even so, they may still qualify for accommodations under the federal Americans with Disabilities Act (ADA).

The ADA defines a person with disability as someone who has “a physical or mental impairment” that significantly alters one or more major life activities. You may have trouble sitting, standing or walking, for example. The key is whether the limitation is substantial

It is important to note the ADA’s definition is a legal one, not medical. And because it is a legal definition, the meaning of disability is different than it would be under other laws. The ADA doesn’t list all the covered conditions, which gives some flexibility to people living with  non-specific chronic pain; which is pain that lasts longer than three months, but has no specific medical cause.

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For example, you could have joint pain from rheumatoid arthritis, while someone else’s back pain may not be related to a specific event or health condition. It doesn’t make the other person’s pain any less valid than yours or diminish their need for job accommodations. Back pain would still be considered an impairment.

You Do Not Have to Disclose When Job Hunting

The ADA does not require you to disclose your medical conditions when interviewing and applying for jobs.  However, the employer is allowed to ask questions about whether there is anything that could prevent you from doing the job required. 

They may inquire about medical conditions and request a medical exam, but only if they are doing this with all their new hires and being in good physical health is a requirement to perform the job.

You Do Not Have Disclose When You Start a New Job

If you didn’t disclose your condition while interviewing or when you started the job, you can still ask for accommodations later.  You have the right to ask when the need arises.

If you request an accommodation, an employer is allowed to ask for a reasonable corroboration of your need for one,  such as a doctor’s letter. You can disclose what you want about your medical condition and it doesn’t have to be everything.

You Can Disclose on Your Own Timetable

You are under no legal obligation to tell anybody at your job about your chronic pain.  Your employer also does not have any legal right to request this information from you; unless it involves health and safety obligations they are required to meet.  

It is your decision when and if you want to tell your employer, ask for accommodations and/or share with your co-workers.  You never have to let anyone know if you don’t want to.

Should You Disclose?

If you believe chronic pain affects your ability to do your job, think about the ways it does and what solutions there might be.  For example, are you leaving work often for medical appointments? Would a flexible schedule or working from home one day a week help your situation?

Or could you benefit from other tools that make it easier to work, such as an ergonomic workstation?  Keyboards, mice, office chairs, standing desks and other ergonomically designed tools are increasingly being used in the workplace because they reduce the risk of back pain and other musculoskeletal disorders. 

A good resource where you can find examples of accommodations for specific medical conditions is the Job Accommodation Network.

Things May Not Go as You Plan

If you choose to disclose, you may not get the response you want. Your employer is prohibited by law from terminating you based on your need for accommodation.  However, they might find other ways to get rid of you or retaliate, such as changing your work schedule or denying you a promotion.

They’re taking a big risk if they do. Any form of retaliation when someone asserts their rights is illegal under the ADA. The question will be -- can you prove it? Always keep good records and notes about your communications with an employer about your medical conditions.

Your employer can deny your request for a specific accommodation, provided they are willing to accommodate you in other ways.  For example, if your office space is cold and your joints hurt more in that environment, they could deny your request for a space heater due to fire concerns, but offer to move you to a warmer section of the office as an alternative.

The good news is that your employer cannot flat out deny your request for accommodation. They are required to make a good faith effort to accommodate you in ways that make it easier to do your job with chronic pain.

Good Employers Want to Keep Good Employees

There are no easy answers as to whether you should or shouldn’t disclose your chronic pain to your employer. You should do what works best for you and your workplace. A good employer will be motivated to keep you and will do everything to accommodate you. Others may not.

Make sure you are continually updating your resume and your skill-set should you need to look for a new job.

I have been fortunate to work for companies that have accommodated my needs as a person with chronic pain.  They have understood my need for a flexible work schedule, an ergonomic workstation, and to be able to leave work early or show up late after medical appointments. They’ve made it easier for me to be successful at my job.

I know the idea of disclosure can make you nervous, but it may help you get the support necessary to be a better employee.  From my experience, most employers are accommodating and want to keep valuable employees. They know that the best employees are found in comfortable workplaces.

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Lana Barhum is a medical writer, patient advocate, legal assistant and mother. Having lived with rheumatoid arthritis and fibromyalgia since 2008, Lana uses her experiences to share expert advice on living successfully with chronic illness. She has written for several online health communities, including Alliance Health, Upwell, Mango Health, and The Mighty.

To learn more about Lana, visit her website.

The information in this column should not be considered as professional medical advice, diagnosis or treatment. It is for informational purposes only and represent the author’s opinions alone. It does not inherently express or reflect the views, opinions and/or positions of Pain News Network.

Should I Tell Someone About My Invisible Illness?

By Barby Ingle, Columnist

It can be tricky deciding when to tell someone about your chronic pain or invisible illness. You can never take back information once it is shared.

If you choose to disclose that you have a chronic condition or disability, you should decide when and how to do it. Take the time to think about different situations and how you wish to handle them.

Many people feel it is not their place to ask about your physical conditions, but knowing about your pain and limitations could help them understand where you are coming from with your thoughts and actions.

I know a chronic pain patient who liked a neighbor and was interested in dating him.  He often helped around her house with handyman projects, and she would see him out on his porch and go out and talk to him. Eventually, he asked her out and they had a great time.

Over the next few months, they had dates scheduled but she ended up canceling a lot of them. She was just in too much pain. He began to think she was not interested in him and started to pull away.

Friends encouraged her to tell him about her medical condition and what she was going through. She did, and he stuck around for a while, but in the end it did not work out. However, they remained friends and it helped her see that she could still have a social life.

If you’re in this or another social situation, you should think about the following when deciding whether to disclose your condition and how it affects you:

  • Are you able to participate in activities using your coping skills and tools?
  • Do you need accommodations?
  • Are you able to perform the activity safely if you choose not to disclose?
  • Do you think the other person will react in a way that’s appropriate for where you are?

If you are not sure about the latter, you may want to wait until you are in a private setting.

If the situation becomes an intimate relationship, it is very important to share even if it means losing that person. It is not fair to them or you to hold that information back.

If your disability is in remission or typically under control, is there a reason to disclose? It is possible that flare-ups may keep you from future activities, so it would be a good thing to disclose ahead of time. The education you give them may also help someone else they meet along the way.

Finally, how will you address misconceptions about your chronic condition when you disclose? Some people do not believe in treating pain with narcotic medications or had a bad experience with someone else in their life with chronic pain.   

Not disclosing is wrong if you are in a situation that can cause others harm. For instance, when getting on a plane, you shouldn’t be sitting in the exit row. If assigned by mistake, notify the flight crew.

When choosing situations and activities where you do not want to disclose your disability, take time to carefully analyze the activities you are able to do and plan accordingly. Remember, you can always reveal more information later as needed.

Miss Understood: How I Won My Disability Case

By Arlene Grau, Columnist

Early March of this year my second hearing was set with Social Security regarding my disability claim. I had previously been denied and we appealed.

The judge wanted one of their rheumatologists to come in and read my blood tests, doctors’ notes and other medical records, because he said he couldn't decipher them.

Two weeks before our hearing date we got word that the specialist they selected was actually a kidney doctor.

My lawyer wrote the judge informing him that we wanted someone else because we felt that the doctor wasn't qualified for my case. We never heard back from the judge, but the doctor excused herself.

The day of the hearing the judge was as harsh as ever and upset because no one in his office told him about the doctor. He wanted to reschedule my hearing until they got another specialist.

But my lawyer wasn't ready to give up and I was so frustrated at that point that I begged him to let us say our peace. Reluctantly he did.

I suffer from rheumatoid arthritis, lupus and other autoimmune diseases. We were able to prove that I had missed numerous days from work due to hospitalization, surgeries or illness based on time sheets and hospital records. I also have numerous doctors’ appointments every month and had the medical records to prove it. Basically everything the judge had a question for, we had supporting documentation.

I had walked in thinking the judge was going to deny me again, because he had stated that rheumatoid arthritis and lupus aren't disabling diseases. I had plenty to tell him about that, but he just brushed off everything we had to say.

The second time around, he was very different.

I honestly believe that prayer works. That and being prepared. Having all your bases covered and making sure you have all your paperwork squared away. I got a print up of all my doctors’ visits and built a graph of them by month and year. Then I did the same thing for my hospitalizations. I also got a print up of my work time sheets and graphed the days I missed by month and year. For some reason the judge liked the graphs more than the print ups themselves.

In the end, the judge awarded me close to three years of disability that I was owed in retro pay. I’m also now receiving Medicare. Although it took 3 years, I'm glad I didn't give up and that I had so much positive support from friends and family. My family and I are finally able to put this behind us.

Arlene Grau lives in southern California. She suffers from rheumatoid arthritis, fibromyalgia, lupus, migraine, vasculitis, and Sjogren’s disease.

The information in this column should not be considered as professional medical advice, diagnosis or treatment. It is for informational purposes only and represent the author’s opinions alone. It does not inherently express or reflect the views, opinions and/or positions of Pain News Network.

Disability Resources You May Not Know About

By Barby Ingle, Columnist

Over the past 20 years I have had many ups and downs with my health and my finances. After losing my job and company, I had to rely on food stamps, church food banks, and county mental health support groups.

While speaking with others in the support group, I found out that there are a wide variety of disability benefits that come from federal, state and private sources, such as worker’s compensation for people injured on the job and military benefits for soldiers and veterans.

We need to invest time to make sure that the resources available to us are being utilized. There are Social Security programs, Medicare, Medicaid, state assistance programs, utility company programs, handicapped bus passes and car licenses, to name some of them.

Too many of my friends either didn’t know about them or felt embarrassed to ask for assistance.

Knowing what each one is and how it can be used is important. For instance, Supplemental Security Income (SSI) comes from general tax revenues, not social security tax funds.

SSI is designed to help aged, blind, and disabled people who have little or no income. It provides cash to meet basic needs for food, clothing, and shelter. Typically, you quality if you have a medical condition that has prevented you from working or is expected to prevent you from working for at least 12 months.

Social Security Disability (SSD) comes from federal social security taxes that people pay into in case of long-term disability. You must have worked and paid Social Security taxes long enough to qualify. Depending on the state you live in, you can complete the application through the mail, over the phone, or even online.

If you receive SSD, you can quality for Medicare 24 months after becoming eligible for disability.  In my case, I became eligible for Medicare almost immediately, as it was a few years into my disability and they retroactively changed my disability date.

For others who apply sooner, you typically will receive your information several months before you are eligible to start Medicare coverage. I highly suggest that you fill out your papers immediately and return them. There are different requirements in each state for financial and disability levels. Medicaid services can included preventive care, immunization, screening, treatment, doctor visits, hospital visits, and vision and dental care.

Many states offer specific programs that can help you through daily living. It is important for chronic care patients to maintain independence to sustain their full range of experiences, rights and desires. Programs that provide training and support appropriate to the needs of each disabled person can be found in every state.

People disabled by pain may not realize at first that they are eligible for many of these services. They don’t think that their condition is debilitating enough to require handicapped parking, and underestimate the benefit of closer parking or how much energy it saves.

We should always be mindful of our energy penny bank. Handicapped permits and passes allow a disabled person to run errands, shop, go to doctor appointments, travel, and participate in other activities without wearing themselves out within the first few minutes of arriving at a destination.

If you have a disabling pain condition which may allow you to have a handicapped parking permit, talk to your doctor about it. Do not wait for your doctor to bring it up. Doctors are very busy and it is unlikely that this is foremost on their minds. Your doctor should not hesitate to sign the paperwork for you to get a handicapped parking placard if you are eligible under your state regulations.

Also be sure to get a bus pass for disabled riders. They are available in most states and typically give you free or discounted rides.

I used to take the bus often. If you find yourself in a city needing to take the bus, be sure to learn the schedule and let the bus driver know if you have any disabilities or need assistance. Ask him to remind you to get off the bus at your final destination or transfer location. I would forget my stop far too often. You learn to speak up when this happens and you miss a doctor’s appointment.

Patient transportation services are also available for some Medicaid and Worker’s Compensation patients. These companies ensure that patients are transported with the right level of medical expertise in the most appropriate vehicle, such as specialty vans that accommodate wheelchairs. Other modes of transport include ambulatory, wheelchair, stretcher, and air ambulance.

The insurance company is directly billed with a detailed invoice as to miles driven, time of transport, and drop off locations. Services are typically available every day of the year. You can set up this service with your claims adjuster or care manager. I know many who already use this service and love it. One of the iPain board members actually owns a company in Kansas and Missouri that operates this service. If you quality, ask for the help.  

No matter what resource you need, don’t hesitate to ask for them. Get the help you need to become the most active person you can be. Not treating pain is unethical and immoral. When you qualify for assistance, it means you have earned it and it is there to help you help yourself.

For a list of other free or low cost services available to you, checkout the Patient Resources section of Pain News Network. We all pray it is short term assistance, but if long term or life assistance is needed, be the best you can be and take advantage of the help that is available to you.

Barby Ingle suffers from Reflex Sympathetic Dystrophy (RSD) and endometriosis. Barby is a chronic pain educator, patient advocate, and president of the International Pain Foundation (iPain). She is also a motivational speaker and best-selling author on pain topics.

More information about Barby can be found by clicking here.

The information in this column should not be considered as professional medical advice, diagnosis or treatment. It is for informational purposes only and represents the author’s opinions alone. It does not inherently express or reflect the views, opinions and/or positions of Pain News Network.

Miss Understood: Judged and Defeated

By Arlene Grau, Columnist

I like to think of myself as the type of person who always gets back up no matter how hard I get knocked down. It may not always be as quick as I'd like, but I find my courage and strength through every circumstance. Recently, I got hit with a big blow and I haven't figured out how to get back on my feet and keep fighting.

I had my disability case heard by a judge in May. I knew it could go either way, but I  felt like my lawyer had prepared a really good case and I had a chance.

My lawyer started to present my case to the judge, but as soon as he stated my disabilities the judge took one look at me and asked me how I knew I had Lupus and rheumatoid arthritis. I told him I had countless lab tests done, physical exams, two skin biopsies (I showed him the scars), x-rays, MRI's, and CAT scans.

The judge then asked my lawyer for “proof” showing that I do in fact have these diseases, because letters from my doctors won't do. People have been known to pay doctors to write them, he said.

I was amazed at what was happening. I understand why the judge was saying that, because there is so much fraud going on in disability cases. But I think it would be very hard to fake everything I have. I even showed him the scar I have on my wrist from surgery needed to repair the damage caused by arthritis. My lawyer showed him the file backing up my story, but he still looked like he didn't believe a word I said.

My lawyer was able to provide lab results showing that I am in fact positively diagnosed with rheumatoid arthritis and Lupus. But when he tried to explain them, the judge’s response was, "I'm not a doctor, I can't read these and confirm that."

In the end, the ruling was that my case would continue on another day --- when a rheumatologist provided by the state can either come in or phone in to confirm or deny that I am diagnosed with what I have.

It only took the judge about 10 minutes to decide he didn't want to hear my case. He didn't believe that I was sick, even with the proof documented right in front of him.  One was a lab summary with a footnote from one of the doctors where I was hospitalized, explaining that I was there because I was having an arthritis and Lupus flare.

All he had to do was read it, but he refused.

To date, I've been without disability benefits for 26 months and it has been the most stressful two years of my life. Even with the insurance that I'm paying for, I'm responsible for 10% of the cost of my health care.  My medical expenses are ridiculously high because I need infusions, biweekly blood work, MRI's, etc. -- along with weekly visits to my rheumatologist and monthly visits to see my pain specialist.

Right now I feel so defeated. No matter what I wanted to do or say, I had to sit there quietly and let that man judge me and rule over me with all his ignorant power.

I've come so far when it comes to dealing with people who refuse to understand my diseases or learn about them. But then my trial brought me back to a place where I don't want to be. Being judged by others is never fun. When you're being accused of such a big lie and your character is poked at, you can't help but get hurt and take it personal.

Someone once told me that they might deny me because I can't be 29 and disabled. My response to them was does a five year old child ask to be given leukemia? Does a 23 year old ask to be given breast cancer? Of course not. But sometimes those are the cards we're dealt.

I was two weeks shy of my 23rd birthday when I was diagnosed with RA and fibromyalgia. I was still able to work hard for another 5 years, until they started to take a toll on my body.

Just because the name isn't cancer doesn't mean it isn't a serious disease.

I wish this judge would hear the story of my journey with RA, Lupus and fibromyalgia so he could get a better understanding of just how advanced they're getting. But instead all he sees is the person delivering the information: A young, seemingly healthy, able body.

Frauds have ruined the system for those of us who truly need and deserve it.

Arlene Grau lives in southern California. She suffers from rheumatoid arthritis, fibromyalgia, lupus, migraine, vasculitis, and Sjogren’s disease.

The information in this column should not be considered as professional medical advice, diagnosis or treatment. It is for informational purposes only and represent the author’s opinions alone. It does not inherently express or reflect the views, opinions and/or positions of Pain News Network.