Patient Stories
Difficulty in accessing prescription medicines is a real problem affecting all Americans. Read these stories to learn more about the barriers these individuals experienced in accessing their prescription medicines.
Check back regularly to read stories from people who have experienced challenges to accessing their prescription medicine.
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Name: Vicki D.
State: IL
I have been living with psoriasis and psoriatic arthritis for most of my life. For more than 30 years, I've dealt with the itching, burning and soreness across my body, as well as the pain associated with the arthritis. But what's proven to be equally as painful is battling my insurer to have access to a medication that drastically improved my chronic symptoms.
After years of trying various medications and treatments including injectable biologics and light therapy treatments, last January, my doctor told me about a new medication on the market that was showing great promise for psoriasis and psoriatic arthritis. My doctor thought the treatment might work, but warned me that insurance companies were repeatedly denying prescriptions.
As predicted, the first prescription my doctor wrote was denied. I was told I would have to try and fail on other medications before the insurer would consider covering the prescribed medication.
Following intensive follow-up by my doctor, my insurer relented -- somewhat. They offered to help cover the cost of the drug, but my monthly out of pocket costs for the medication would be $1,000 -- who could possibly afford that?
In order to "prove" I needed the medication, the insurance company told me I needed to fail on two biologic injectable medications -- despite the fact my doctor, the staff in his office, and I repeatedly told the insurer that I have tried -- and failed -- on those same medications in the past. We also told them that not only had I tried and failed, these medications that they were trying to force me to take had actually made my condition worse in the past. It didn't matter to them.
Through further work by the staff at the doctor's office, last April, I was able to enroll in a program with the medication manufacturer that gives me access to the medication -- with no co-pay. Within a matter of two weeks of starting the new medication, my symptoms drastically improved and were cleared up completely shortly thereafter.
I am grateful that I've been able to find relief through the good work of my doctor, his staff and the patient assistance program. But I do worry that someday, the program might change or end -- which would be devastating. I can't imagine having to go through this process again.
After years of trying various medications and treatments including injectable biologics and light therapy treatments, last January, my doctor told me about a new medication on the market that was showing great promise for psoriasis and psoriatic arthritis. My doctor thought the treatment might work, but warned me that insurance companies were repeatedly denying prescriptions.
As predicted, the first prescription my doctor wrote was denied. I was told I would have to try and fail on other medications before the insurer would consider covering the prescribed medication.
Following intensive follow-up by my doctor, my insurer relented -- somewhat. They offered to help cover the cost of the drug, but my monthly out of pocket costs for the medication would be $1,000 -- who could possibly afford that?
In order to "prove" I needed the medication, the insurance company told me I needed to fail on two biologic injectable medications -- despite the fact my doctor, the staff in his office, and I repeatedly told the insurer that I have tried -- and failed -- on those same medications in the past. We also told them that not only had I tried and failed, these medications that they were trying to force me to take had actually made my condition worse in the past. It didn't matter to them.
Through further work by the staff at the doctor's office, last April, I was able to enroll in a program with the medication manufacturer that gives me access to the medication -- with no co-pay. Within a matter of two weeks of starting the new medication, my symptoms drastically improved and were cleared up completely shortly thereafter.
I am grateful that I've been able to find relief through the good work of my doctor, his staff and the patient assistance program. But I do worry that someday, the program might change or end -- which would be devastating. I can't imagine having to go through this process again.
Name: Sue M.
State: IL
I was diagnosed with psoriasis in 2014 when painful, itchy red spots developed on my feet. My doctor tried prescribing a number of medications, creams and lotions - but nothing worked.
Because I have pre-existing medical issues, my doctor did not feel it was safe for me to try biologics, which are sometimes prescribed to treat psoriasis. Following a heart attack several years ago, I was put on a medication that has the potential to cause liver damage - I'm already being monitored every six months to make sure there are no side effects. Biologics, which are self-injected, carry a black box warning that they can cause liver damage. My doctor and I agreed it was more of a risk than we were willing to take with my health.
The good news is that there was a non-biologic oral medication that came without any of the liver damage side effects. By my insurer refused to pay for it. I was told that I'd have to try and fail on the biologic medications before my insurer would cover the cost of the medication my doctor had prescribed! All of this despite the fact that there could be serious medical consequences for me!
My doctor and his staff tried repeatedly to appeal to my insurer, explaining over and over why I needed the medication that had been originally prescribed, but the insurer still refused to pay.
Luckily, the staff helped me get approved for a program through the drug manufacturer.
I receive the medication at a lower dose through this program, and my symptoms improved really quickly. My one frustration is that if I were able to get the full dosage paid for by my insurer, I think my condition would be even better.
Because I have pre-existing medical issues, my doctor did not feel it was safe for me to try biologics, which are sometimes prescribed to treat psoriasis. Following a heart attack several years ago, I was put on a medication that has the potential to cause liver damage - I'm already being monitored every six months to make sure there are no side effects. Biologics, which are self-injected, carry a black box warning that they can cause liver damage. My doctor and I agreed it was more of a risk than we were willing to take with my health.
The good news is that there was a non-biologic oral medication that came without any of the liver damage side effects. By my insurer refused to pay for it. I was told that I'd have to try and fail on the biologic medications before my insurer would cover the cost of the medication my doctor had prescribed! All of this despite the fact that there could be serious medical consequences for me!
My doctor and his staff tried repeatedly to appeal to my insurer, explaining over and over why I needed the medication that had been originally prescribed, but the insurer still refused to pay.
Luckily, the staff helped me get approved for a program through the drug manufacturer.
I receive the medication at a lower dose through this program, and my symptoms improved really quickly. My one frustration is that if I were able to get the full dosage paid for by my insurer, I think my condition would be even better.
Name: April R.
State: IL
I share my story in hopes of it bringing change. I am a young mother who relies on 30 pills a day to help me function. This is because I fell down a flight of steps at work seven years ago and broke my spine. After 17 surgeries, my wounds are healed but I suffer from complex regional pain syndrome. Making matters much more complicated over the last several years is a health insurance practice called step therapy. It has prevented me from getting the medications I need, and has had a very negative, debilitating effect on my life.
Step therapy is used by health plans to control costs of patients'?medications. With step therapy, patients have to go through a series of steps, taking other medications and failing on them before being allowed to receive the medication originally prescribed by their doctors. These requirements are not dependent on a patient?s medical situation, but rather by cost.
My most recent experience with step therapy involved my rheumatologist trying to get my autoimmune disease in remission. She prescribed Methotrexate as well as a couple of other drugs that she thought would help me most with my pain. Surprisingly when I went to the pharmacy to pick them up, I was unable to leave with those important meds that day. My insurance company denied them. My doctor immediately called the insurance company. She was told that there was a list of other medications that I needed to try first and fail on before I could have the meds my doctor ultimately wanted me to take.
Honestly, this began the most miserable nine months of my life.
I had to try each medication for at least 30 days at a time. Each medication failed, and during that time I was stuck at home, unable to get out of bed due to the pain and other debilitating symptoms of my disease. It was so frustrating to both my doctor and myself knowing that there were medications out there that I could be taking that would help my illness so much more, but that my insurance company was not willing to cover these meds until it was proven by their standards that they were ineffective for me.
My doctor is the professional when it comes to my illness and my meds, however the insurance company doesn't always allow my doctor to do her job. When I was finally allowed access to the meds I needed, my health improved greatly. In fact, I went into remission just a couple of short months after being allowed to get those prescriptions. It?s sad to think that I wasted a good nine months trying to get those meds. I truly believe that step therapy is detrimental to patients like me just trying to get the help they need.
Illinoisans need to support any legislation that would curb step therapy so insurance companies do not have the final say in a patient's?medical treatment regimen. I hope our local state lawmakers will back this legislation in the future.
Step therapy is used by health plans to control costs of patients'?medications. With step therapy, patients have to go through a series of steps, taking other medications and failing on them before being allowed to receive the medication originally prescribed by their doctors. These requirements are not dependent on a patient?s medical situation, but rather by cost.
My most recent experience with step therapy involved my rheumatologist trying to get my autoimmune disease in remission. She prescribed Methotrexate as well as a couple of other drugs that she thought would help me most with my pain. Surprisingly when I went to the pharmacy to pick them up, I was unable to leave with those important meds that day. My insurance company denied them. My doctor immediately called the insurance company. She was told that there was a list of other medications that I needed to try first and fail on before I could have the meds my doctor ultimately wanted me to take.
Honestly, this began the most miserable nine months of my life.
I had to try each medication for at least 30 days at a time. Each medication failed, and during that time I was stuck at home, unable to get out of bed due to the pain and other debilitating symptoms of my disease. It was so frustrating to both my doctor and myself knowing that there were medications out there that I could be taking that would help my illness so much more, but that my insurance company was not willing to cover these meds until it was proven by their standards that they were ineffective for me.
My doctor is the professional when it comes to my illness and my meds, however the insurance company doesn't always allow my doctor to do her job. When I was finally allowed access to the meds I needed, my health improved greatly. In fact, I went into remission just a couple of short months after being allowed to get those prescriptions. It?s sad to think that I wasted a good nine months trying to get those meds. I truly believe that step therapy is detrimental to patients like me just trying to get the help they need.
Illinoisans need to support any legislation that would curb step therapy so insurance companies do not have the final say in a patient's?medical treatment regimen. I hope our local state lawmakers will back this legislation in the future.
Name: Scott D.
State: NY
I know first hand why forcing patients to take medication other than what their doctor prescribes is a bad idea.
I have been living with HIV for nearly 30 years. I take three medications to manage my disease, but a lesser-known side effect of HIV medications is high cholesterol. In order to combat that, my doctor put me on a medication that worked successfully in keeping my cholesterol numbers low. ?I had been on that medication for 12 years, when my insurer told me that I needed to try a different medication to ?prove? that it didn?t work before they would continue paying for the original medication.?
In a matter of months, my cholesterol jumped and my doctor increased the dosage several times with no success in bringing down my cholesterol numbers.
I contacted my insurer to find out what needed to be done to get back on the medication that had worked. ?I was told I needed my prescribing doctor and my HIV doctor to send in appeals on my behalf.?
Those appeals took approximately two months to be resolved before I was allowed to go back on the effective medication. ?My cholesterol numbers have been stable since being put back on my original medication.?
Following my recent retirement and change in my insurance status, I had to go through the process again, to ensure I could stay on the original medication.
When you?re living with a chronic illness and taking multiple medications, even the slightest change can have a domino effect on your overall health. ?Step therapy puts patients like me who are stable on proven medications at risk unnecessarily. ?For example, my current health insurance carrier was requiring me to switch to the generic option of one drug of my three drug regimen for treating my HIV. Failure on this new drug would mean failure of the entire regimen, which has been successful keeping me virally suppressed for the past 10 years. ?
Once again we were forced to adhere to the appeals process. Fortunately, my HIV doctor was able to convince the insurance company not to force the change, but I know not every patient is as lucky. ?That?s why I think step therapy protocols need to be changed.?
I have been living with HIV for nearly 30 years. I take three medications to manage my disease, but a lesser-known side effect of HIV medications is high cholesterol. In order to combat that, my doctor put me on a medication that worked successfully in keeping my cholesterol numbers low. ?I had been on that medication for 12 years, when my insurer told me that I needed to try a different medication to ?prove? that it didn?t work before they would continue paying for the original medication.?
In a matter of months, my cholesterol jumped and my doctor increased the dosage several times with no success in bringing down my cholesterol numbers.
I contacted my insurer to find out what needed to be done to get back on the medication that had worked. ?I was told I needed my prescribing doctor and my HIV doctor to send in appeals on my behalf.?
Those appeals took approximately two months to be resolved before I was allowed to go back on the effective medication. ?My cholesterol numbers have been stable since being put back on my original medication.?
Following my recent retirement and change in my insurance status, I had to go through the process again, to ensure I could stay on the original medication.
When you?re living with a chronic illness and taking multiple medications, even the slightest change can have a domino effect on your overall health. ?Step therapy puts patients like me who are stable on proven medications at risk unnecessarily. ?For example, my current health insurance carrier was requiring me to switch to the generic option of one drug of my three drug regimen for treating my HIV. Failure on this new drug would mean failure of the entire regimen, which has been successful keeping me virally suppressed for the past 10 years. ?
Once again we were forced to adhere to the appeals process. Fortunately, my HIV doctor was able to convince the insurance company not to force the change, but I know not every patient is as lucky. ?That?s why I think step therapy protocols need to be changed.?
Name: Remonde L.
State: FL
I'm not really sure when my symptoms started, but I was officially diagnosed with psoriasis in 2006. It started on my scalp and eventually spread to other parts of my body. It was mild at first, but it became severe quickly.
I must have tried hundreds of topical treatments - you need a different cream or lotion or spray for each different body part, because you can't put the treatment you use for your hands on your scalp. Each new treatment would help for a little while, but nothing worked long term. I even started losing my hair.
The physical symptoms were painful, uncomfortable and sometimes embarrassing. Huge flakes would come out of my hair, or my skin would crack and bleed. I was constantly itching, and the skin on my scalp felt like it was stretched so tight it might break. I also developed bursitis in both shoulders.
The emotional toll was also heavy. I felt worn out, trying treatments, going to appointments all the time. I was depressed; nothing was really helping. The treatments were extremely expensive, and I was constantly looking for coupons or discounts. I was constantly stressed, which is a classic trigger for my disease.
I kept researching different treatment options and eventually, I learned about an oral medication and asked my doctor if I could try it. Originally, the next step in my treatment plan was to try methotrexate, but I was really concerned about the side effects and the potential for damage to the rest of my body.
I've been on this medication for six months, and I've just started regrowing my hair. It's been a life-changer for me, and the only thing that frustrates me is that it took years for me to find this treatment option. I don't know if my doctor didn't prescribe it to me long ago because it was expensive or because he didn't think my insurance woudn't cover it, but I feel like I still deserved to know about all of my options, not just whatever step was next.
Now I'm unemployed and I need to find a new doctor and specialist. I don't know if I'll still have access to this prescription, or if I'll have to start the steps all over again.
I must have tried hundreds of topical treatments - you need a different cream or lotion or spray for each different body part, because you can't put the treatment you use for your hands on your scalp. Each new treatment would help for a little while, but nothing worked long term. I even started losing my hair.
The physical symptoms were painful, uncomfortable and sometimes embarrassing. Huge flakes would come out of my hair, or my skin would crack and bleed. I was constantly itching, and the skin on my scalp felt like it was stretched so tight it might break. I also developed bursitis in both shoulders.
The emotional toll was also heavy. I felt worn out, trying treatments, going to appointments all the time. I was depressed; nothing was really helping. The treatments were extremely expensive, and I was constantly looking for coupons or discounts. I was constantly stressed, which is a classic trigger for my disease.
I kept researching different treatment options and eventually, I learned about an oral medication and asked my doctor if I could try it. Originally, the next step in my treatment plan was to try methotrexate, but I was really concerned about the side effects and the potential for damage to the rest of my body.
I've been on this medication for six months, and I've just started regrowing my hair. It's been a life-changer for me, and the only thing that frustrates me is that it took years for me to find this treatment option. I don't know if my doctor didn't prescribe it to me long ago because it was expensive or because he didn't think my insurance woudn't cover it, but I feel like I still deserved to know about all of my options, not just whatever step was next.
Now I'm unemployed and I need to find a new doctor and specialist. I don't know if I'll still have access to this prescription, or if I'll have to start the steps all over again.
Name: Doris Ann P.
State: NC
I've lived with metastatic (also known as "stage four") breast cancer for nine years. While the cancer is now in my bones, brain, lungs, liver and just about every lymph node in my body, I've been able to fight it with timely access to front-line medications.
Treatments may control the disease for a period of time, but eventually the disease shows signs of progression, and I must move onto a different treatment regimen. As a result, I have to try new drugs - and often. The sad truth, however, is that insurance companies are actively erecting barriers that keep patients like me from obtaining what our physicians prescribe.
My oncologist and I actively campaigned for two years to gain access to an innovative conjugate therapy that was specifically approved by the FDA to treat late-stage breast cancer like mine. Before I could be treated with this drug, my insurer required me to first try and fail on another therapy - one which was much less targeted and more systemically toxic to my body. Despite appeals by my oncologist, I had to waste valuable time taking the other treatment before I could access the drug that could work best.
Had my insurer let me have the new treatment originally prescribed by my oncologist instead of making me wait two years and fail first on older drug, my cancer might not have spread so quickly.
Fighting cancer or any other disease shouldn't mean a fight with insurers, too.
Treatments may control the disease for a period of time, but eventually the disease shows signs of progression, and I must move onto a different treatment regimen. As a result, I have to try new drugs - and often. The sad truth, however, is that insurance companies are actively erecting barriers that keep patients like me from obtaining what our physicians prescribe.
My oncologist and I actively campaigned for two years to gain access to an innovative conjugate therapy that was specifically approved by the FDA to treat late-stage breast cancer like mine. Before I could be treated with this drug, my insurer required me to first try and fail on another therapy - one which was much less targeted and more systemically toxic to my body. Despite appeals by my oncologist, I had to waste valuable time taking the other treatment before I could access the drug that could work best.
Had my insurer let me have the new treatment originally prescribed by my oncologist instead of making me wait two years and fail first on older drug, my cancer might not have spread so quickly.
Fighting cancer or any other disease shouldn't mean a fight with insurers, too.
Name: Terri E.
State: FL
I've been a nurse in Florida for years, so I understand the process of developing treatment plans better than many. What I don't understand is why step therapy gets in the way of doctors prescribing the best treatments available for their patients. And for me, it's not just about what I see at my job - I was diagnosed with psoriasis and psoriatic arthritis seven years ago. For me, step therapy was a difficult and painful process.
Starting a treatment that you know won't work is awful. You feel so bad and you know the disease isn't under control. Months go by and you just want to feel better but you can't because you have to keep adjusting the doses up. It's incredibly frustrating; you're so tired and it hurts so much and nothing is getting any better.
I guess you could say I'm one of the lucky ones because I was able to get my treatment within several months. My quality of life has improved and I'm able to work. For me, that's important - I'm able to contribute back to society and continue caring for my patients. That process was unnecessarily extended by step therapy.
When someone comes in 90 percent covered with psoriasis, doctors should be able to prescribe the right treatment the first time. Patients shouldn't have to hear that they can't access the medications on their treatment plans because they haven't tried other options yet. The number crunchers shouldn't be the ones choosing which treatments to try first.
Starting a treatment that you know won't work is awful. You feel so bad and you know the disease isn't under control. Months go by and you just want to feel better but you can't because you have to keep adjusting the doses up. It's incredibly frustrating; you're so tired and it hurts so much and nothing is getting any better.
I guess you could say I'm one of the lucky ones because I was able to get my treatment within several months. My quality of life has improved and I'm able to work. For me, that's important - I'm able to contribute back to society and continue caring for my patients. That process was unnecessarily extended by step therapy.
When someone comes in 90 percent covered with psoriasis, doctors should be able to prescribe the right treatment the first time. Patients shouldn't have to hear that they can't access the medications on their treatment plans because they haven't tried other options yet. The number crunchers shouldn't be the ones choosing which treatments to try first.
Name: Julie R.
State: FL
I was diagnosed with psoriatic arthritis in 2009 and soon after with fibromyalgia - both autoimmune diseases. Because of step therapy and the problems I've had getting the right treatments covered by health insurance, the psoriatic arthritis has progressed into my spine, shoulders, hands and feet. The pain is unbelievable.
For my condition, pain medicine doesn't really relieve the pain. I do lots of meditation and I stay in motion. I'm lucky that I live in Florida and I can walk in the ocean; the salt water helps me a lot.
The first rheumatologist I saw for my diagnosis gave me methotrexate, an oral steroid and a painkiller. I continued to take methotrexate for several years while trying and failing other treatments; all the while, no one thought to check my liver counts to make sure the methotrexate wasn't causing additional harm.
After six years of taking methotrexate, I started to get spots on my arms. Another doctor told me I likely had cirrhosis of the liver because of the methotrexate. In 2015, I stopped all treatments except my pain reliever because I wanted to save my liver.
After my liver biopsy came back normal, I went back to a rheumatologist who prescribed a biologic infusion. My insurance company won't cover any specialty drugs, so I had to find financial assistance from a foundation to cover the exorbitant copays and help from a pharmacy to cover the cost of the actual treatment.
I start my new treatment in early June, and I can't wait. I don't even want to know what the side effects are; I just want the pain to go away. I want to stop the progression of the disease. I want to be able to go fishing again and enjoy the rest of my life.
For my condition, pain medicine doesn't really relieve the pain. I do lots of meditation and I stay in motion. I'm lucky that I live in Florida and I can walk in the ocean; the salt water helps me a lot.
The first rheumatologist I saw for my diagnosis gave me methotrexate, an oral steroid and a painkiller. I continued to take methotrexate for several years while trying and failing other treatments; all the while, no one thought to check my liver counts to make sure the methotrexate wasn't causing additional harm.
After six years of taking methotrexate, I started to get spots on my arms. Another doctor told me I likely had cirrhosis of the liver because of the methotrexate. In 2015, I stopped all treatments except my pain reliever because I wanted to save my liver.
After my liver biopsy came back normal, I went back to a rheumatologist who prescribed a biologic infusion. My insurance company won't cover any specialty drugs, so I had to find financial assistance from a foundation to cover the exorbitant copays and help from a pharmacy to cover the cost of the actual treatment.
I start my new treatment in early June, and I can't wait. I don't even want to know what the side effects are; I just want the pain to go away. I want to stop the progression of the disease. I want to be able to go fishing again and enjoy the rest of my life.
Name: Nikki Y.
State: FL
I've had psoriasis since birth, and I was formally diagnosed when I was two years old. I have inverse, guttate and plaque psoriasis, as well as psoriatic arthritis in my lower back. I've struggled for years to find a treatment that would work and that would be covered by my insurance. Sometimes treatments would just stop working after a couple of months, or I'd find something that was effective only to have my insurance company cut my dosage in half.
Earlier this year, I was on a treatment that worked but I was having a hard time paying my deductible. For several months, I took half doses because I couldn't afford the cost of the full treatment. Now, I'm very fortunate to be receiving assistance with my deductible and I'm hopeful this treatment works for a long time.
Being on the right treatment is important because without medication, my condition is extremely painful. I'm always self conscious about dandruff, or itching too much. I definitely have issues with hiding the pain from people, because it's hard to explain to someone that you're in pain because your skin is ripping. They don't understand an illness they can't see.
Without step therapy, it's possible my doctors would have been able to put me on the right treatment years and years ago, which could have dramatically changed my life. It's hard not to be frustrated that I've lost so much time to my disease
Earlier this year, I was on a treatment that worked but I was having a hard time paying my deductible. For several months, I took half doses because I couldn't afford the cost of the full treatment. Now, I'm very fortunate to be receiving assistance with my deductible and I'm hopeful this treatment works for a long time.
Being on the right treatment is important because without medication, my condition is extremely painful. I'm always self conscious about dandruff, or itching too much. I definitely have issues with hiding the pain from people, because it's hard to explain to someone that you're in pain because your skin is ripping. They don't understand an illness they can't see.
Without step therapy, it's possible my doctors would have been able to put me on the right treatment years and years ago, which could have dramatically changed my life. It's hard not to be frustrated that I've lost so much time to my disease
Name: Aly R.
State: FL
I was diagnosed with Juvenile Idiopathic Arthritis (JA) when I was 13 years old, and ever since then my life has changed.
I used to be extremely active and loved anything that revolved around the outdoors. But because of my arthritis, I can't do much of that anymore. My arthritis is so bad that most of the time I have to rely on a wheelchair to get me around.
I'm 16 now and instead of focusing on the things that most teenagers think about, like their hair or their makeup or where they want to hang out after school, I have to constantly think about how to pace myself every day. It's a balancing act; if I want to go to school for a little bit longer one day, I have to give something else up to conserve my energy. My arthritis keeps me from participating in high school clubs and hanging out with my friends whenever I want.
JA has also affected me socially. Unlike most girls my age, I can't go to the mall on a regular basis or hang out with friends as much as I would like. I have had to miss so many birthdays, dances and fun amusement park trips. Because of this, I have lost many friendships and relationships I cherished. This is starting to become harder to handle because I'm getting older and having "normal" social rating is more and more important in social groups. No one wants to hang out with the girl in the wheelchair who gets tired too easily and doesn't act "normally."
Going to school is very difficult, and I miss much more than I attend. My main goal is to be able to graduate and I'm lucky to have a teacher come to my house when I miss school so I don't get too far behind. I'm staying on track as best I can because one day I would like to go to college and eventually graduate with a degree in journalism. I have always loved writing, and I learned about journalism when I was in middle school. Whether I work on a newspaper, the news, in the entertainment industry or on my own time as an author, I'm looking forward to a future of writing.
All of these plans keep me focused on the future, but since my diagnoses, I have developed a new perspective on life. You have to live in the moment and be thankful for what you have, because you don't know when all of that might change.
I first learned about step therapy when I began the treatment process for my arthritis a few years ago. My insurance company would only approve treatments in a certain order, like steps up a ladder. First, I had to use a chemotherapy drug that gave me a severe reaction. Then, my doctor had to fight to get me started on an injected treatment, but this medicine only worked for a short period of time before it stopped helping me. Next, I had to get a type of biologic infusion that requires another medication to prevent the body from making antibodies. Except I couldn't take that medication, which meant my body made the antibodies and that treatment stopped working. I have no idea how those antibodies could affect me in the future. Now my newest infusion treatment is also failing after only five months, and most days I have to use my wheelchair.
My mom spends hours on the phone fighting to get my treatments approved by the insurance company. Now that my current treatment is failing, my doctor is already talking about what the next step might be and how we may have to fight the insurance company for it. I have an amazing doctor who has always been a strong advocate for my family and me, but just recently he moved out of state. To be able to see him, my mom and I drive 15 hours to Arkansas every few months because we don't want to start all over with a new doctor.
I know my parents are extremely frustrated by all the steps I've had to take and the treatments that I was forced to take even when we knew they would fail. Just thinking about step therapy makes me sick. Insurance is making me wait for the medication that I need to get healthy, just like so many other people are waiting for their treatments to be approved.
In a way, step therapy is hurting me, making me sicker at times due to the steps I have to take to get better medicine. I could have been on a drug that might have worked from the beginning but I needed to take these "steps" and this is why I am advocating to change this. I want to be a voice for all the children that can't speak up or won't be taken seriously. Step therapy has failed me, but I want to keep pressing on. I live my life remembering that the most important thing is to never let anything dull your sparkle, not even Juvenile Arthritis.
I used to be extremely active and loved anything that revolved around the outdoors. But because of my arthritis, I can't do much of that anymore. My arthritis is so bad that most of the time I have to rely on a wheelchair to get me around.
I'm 16 now and instead of focusing on the things that most teenagers think about, like their hair or their makeup or where they want to hang out after school, I have to constantly think about how to pace myself every day. It's a balancing act; if I want to go to school for a little bit longer one day, I have to give something else up to conserve my energy. My arthritis keeps me from participating in high school clubs and hanging out with my friends whenever I want.
JA has also affected me socially. Unlike most girls my age, I can't go to the mall on a regular basis or hang out with friends as much as I would like. I have had to miss so many birthdays, dances and fun amusement park trips. Because of this, I have lost many friendships and relationships I cherished. This is starting to become harder to handle because I'm getting older and having "normal" social rating is more and more important in social groups. No one wants to hang out with the girl in the wheelchair who gets tired too easily and doesn't act "normally."
Going to school is very difficult, and I miss much more than I attend. My main goal is to be able to graduate and I'm lucky to have a teacher come to my house when I miss school so I don't get too far behind. I'm staying on track as best I can because one day I would like to go to college and eventually graduate with a degree in journalism. I have always loved writing, and I learned about journalism when I was in middle school. Whether I work on a newspaper, the news, in the entertainment industry or on my own time as an author, I'm looking forward to a future of writing.
All of these plans keep me focused on the future, but since my diagnoses, I have developed a new perspective on life. You have to live in the moment and be thankful for what you have, because you don't know when all of that might change.
I first learned about step therapy when I began the treatment process for my arthritis a few years ago. My insurance company would only approve treatments in a certain order, like steps up a ladder. First, I had to use a chemotherapy drug that gave me a severe reaction. Then, my doctor had to fight to get me started on an injected treatment, but this medicine only worked for a short period of time before it stopped helping me. Next, I had to get a type of biologic infusion that requires another medication to prevent the body from making antibodies. Except I couldn't take that medication, which meant my body made the antibodies and that treatment stopped working. I have no idea how those antibodies could affect me in the future. Now my newest infusion treatment is also failing after only five months, and most days I have to use my wheelchair.
My mom spends hours on the phone fighting to get my treatments approved by the insurance company. Now that my current treatment is failing, my doctor is already talking about what the next step might be and how we may have to fight the insurance company for it. I have an amazing doctor who has always been a strong advocate for my family and me, but just recently he moved out of state. To be able to see him, my mom and I drive 15 hours to Arkansas every few months because we don't want to start all over with a new doctor.
I know my parents are extremely frustrated by all the steps I've had to take and the treatments that I was forced to take even when we knew they would fail. Just thinking about step therapy makes me sick. Insurance is making me wait for the medication that I need to get healthy, just like so many other people are waiting for their treatments to be approved.
In a way, step therapy is hurting me, making me sicker at times due to the steps I have to take to get better medicine. I could have been on a drug that might have worked from the beginning but I needed to take these "steps" and this is why I am advocating to change this. I want to be a voice for all the children that can't speak up or won't be taken seriously. Step therapy has failed me, but I want to keep pressing on. I live my life remembering that the most important thing is to never let anything dull your sparkle, not even Juvenile Arthritis.
Name: Janet A.
State: FL
I was diagnosed with plaque psoriasis and pustular psoriasis in early 2015. This means I have a terrible, painful rash all over my body and large pockets of thick fluid on my hands and feet. My fingernails and toenails are slowly being pushed away from my hands and feet -- soon they will fall off entirely. It's almost impossible to wear shoes, walk or use my hands.
I've been a paralegal for 25 years, but I can't work any more because I can't meet with clients, file paperwork, turn pages or type. I can no longer do a professional job in a professional office setting. I've went on unemployment in January, but it ran out in May. We had no money and we couldn't pay the bills. I have since filed for disability.
When I first noticed my symptoms, I tried over the counter treatments for a month or two before going to see a doctor. By then, I was almost completely overwhelmed. I had no job, very little money and a lot of pain and discomfort. He diagnosed me as soon as he saw me. He started me on a new oral treatment with very few possible side effects, and it worked almost immediately. Then I had to go on Medicaid because of my unemployment, and I had to find a new doctor.
My new doctor was able to give me a two-week supply of the oral medication, but then had to write me a prescription to obtain a long-term supply. That's when I ran into the step therapy wall.
At this point, I had no idea how difficult it would be to get my prescription filled. I took it to my pharmacy and they submitted it to my insurance company, who promptly requested prior authorization for the drug. The pharmacy submitted a form, which the insurance company denied. My doctor and I were informed that I couldn't take the oral medication because I hadn't tried and failed on two other medications that are part of the step therapy process.
By this time, I had done enough research to know about the black box warnings on many injectible treatments for psoriasis and the dangerous effects these drugs can have on the liver.
I'm genetically predisposed to kidney failure, so these treatments aren't an option for me.
Unfortunately, my insurance company hasn't budged. I've already had one appeal denied, and I just can't fight them any longer. My next step is to start a stronger dose of a biologic medication with a higher risk of side effects. My doctor is certain my insurance will approve this treatment because it is substantially less expensive than the medication I was on before.
The lesson I've learned through all of this is that step therapy just isn't fair to the patient. My doctor knows me, he knows what treatment would be best for me and he's discussed it with me. But the insurance company ignores all of that and tells me what to take and when I can try the next step; at the end of the day, the medication that is best for me still may not be approved.
People need to know what is happening. What would you do if this was your situation, or your child's, your husband's, your parent's?
I've been a paralegal for 25 years, but I can't work any more because I can't meet with clients, file paperwork, turn pages or type. I can no longer do a professional job in a professional office setting. I've went on unemployment in January, but it ran out in May. We had no money and we couldn't pay the bills. I have since filed for disability.
When I first noticed my symptoms, I tried over the counter treatments for a month or two before going to see a doctor. By then, I was almost completely overwhelmed. I had no job, very little money and a lot of pain and discomfort. He diagnosed me as soon as he saw me. He started me on a new oral treatment with very few possible side effects, and it worked almost immediately. Then I had to go on Medicaid because of my unemployment, and I had to find a new doctor.
My new doctor was able to give me a two-week supply of the oral medication, but then had to write me a prescription to obtain a long-term supply. That's when I ran into the step therapy wall.
At this point, I had no idea how difficult it would be to get my prescription filled. I took it to my pharmacy and they submitted it to my insurance company, who promptly requested prior authorization for the drug. The pharmacy submitted a form, which the insurance company denied. My doctor and I were informed that I couldn't take the oral medication because I hadn't tried and failed on two other medications that are part of the step therapy process.
By this time, I had done enough research to know about the black box warnings on many injectible treatments for psoriasis and the dangerous effects these drugs can have on the liver.
I'm genetically predisposed to kidney failure, so these treatments aren't an option for me.
Unfortunately, my insurance company hasn't budged. I've already had one appeal denied, and I just can't fight them any longer. My next step is to start a stronger dose of a biologic medication with a higher risk of side effects. My doctor is certain my insurance will approve this treatment because it is substantially less expensive than the medication I was on before.
The lesson I've learned through all of this is that step therapy just isn't fair to the patient. My doctor knows me, he knows what treatment would be best for me and he's discussed it with me. But the insurance company ignores all of that and tells me what to take and when I can try the next step; at the end of the day, the medication that is best for me still may not be approved.
People need to know what is happening. What would you do if this was your situation, or your child's, your husband's, your parent's?
Name: Lisa C.
State: MA
I am a mother of a 10 year old boy who was diagnosed with colitis 3 years ago. Since Max was diagnosed, he relies on a heavy drug regimen that includes more than 10 different prescriptions a day.
We luckily have health insurance that helps pay a large part of the costs of his prescriptions, but physically getting refills of the drugs when we need them hasn't been easy, and we learned it the hard way.
Once we ran really low on 2 different prescriptions that Max needed and I called my pharmacy to have them refilled, only to be told that the only way we would be able to refill the prescriptions was by ordering at least 6 months' worth and by having them delivered by mail order. Needless to say, we were terrified that Max would have a relapse, since he ran out of pills while we waited 3 days before the prescriptions were able to be delivered. I own a restaurant, and totally understand that buying in bulk can make any product cheaper overall, but this delay seemed so unnecessary to us since we were willing to pay whatever it costs to protect Max's health.
The tradeoff of saving a few dollars wasn't worth putting my son's health at risk.
We luckily have health insurance that helps pay a large part of the costs of his prescriptions, but physically getting refills of the drugs when we need them hasn't been easy, and we learned it the hard way.
Once we ran really low on 2 different prescriptions that Max needed and I called my pharmacy to have them refilled, only to be told that the only way we would be able to refill the prescriptions was by ordering at least 6 months' worth and by having them delivered by mail order. Needless to say, we were terrified that Max would have a relapse, since he ran out of pills while we waited 3 days before the prescriptions were able to be delivered. I own a restaurant, and totally understand that buying in bulk can make any product cheaper overall, but this delay seemed so unnecessary to us since we were willing to pay whatever it costs to protect Max's health.
The tradeoff of saving a few dollars wasn't worth putting my son's health at risk.
Name: Carol K.
State: MA
I am writing about my frustration in receiving a new prescription that my doctor faxed to my insurer. I received numerous phone calls and mailings notifying me of a delay in processing this prescription due to the need for additional information to determine coverage of the requested prescription.
I do know that my doctor has given additional information regarding the reason for this medication and I have given whatever information my insurer has requested.
A week later I spoke with a representative from my insurance company. He listened to my story and spent a lot of time checking out the information, which included talking with my pharmacy benefit management organization. The result of this call was his assurance that the medicine was processing and being sent to me and that I should receive it in approximately six days. This was supposed to be a 30 day supply.
Three days later I received a pre-recorded phone call notifying me of another delay in processing this prescription, stating it is still being processed and will be delayed in getting to me.
I was left totally without any of this medication for a significant amount of time.
I do know that my doctor has given additional information regarding the reason for this medication and I have given whatever information my insurer has requested.
A week later I spoke with a representative from my insurance company. He listened to my story and spent a lot of time checking out the information, which included talking with my pharmacy benefit management organization. The result of this call was his assurance that the medicine was processing and being sent to me and that I should receive it in approximately six days. This was supposed to be a 30 day supply.
Three days later I received a pre-recorded phone call notifying me of another delay in processing this prescription, stating it is still being processed and will be delayed in getting to me.
I was left totally without any of this medication for a significant amount of time.