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March 17, 2020

Advocate for Access: Support the Safe Step Act

Treatment decisions should always be made by patients and trusted health care professionals, not insurance companies or pharmacy benefit managers. It’s time to return the decision-making to doctors and patients.

AARDA is actively promoting passage of the Safe Step Act (HR 2279/S 2546) to reform insurance-mandated step therapy processes by requiring a timely and medically-appropriate appeals process.

Step therapy isn’t a therapy. It is a harmful insurance company tactic that often requires patients to “fail first” on one or more drugs before getting the medicine that doctors originally prescribed.

Due to the harmful effect step therapy can have on autoimmune disease patients, AARDA leads Let My Doctors Decide, a national partnership of leaders across health care in support of step therapy reform in dozens of states.

On the federal level, AARDA signed the Safe Step Coalition’s letter last month to urge Members of Congress to promote passage of the Safe Step Act.

Please join us. Advocate for Access by following the link below to send a message to your legislators encouraging them to support the Safe Step Act.

Update March 19, 2020

Advocating for necessary policy change to alleviate the harmful and unwarranted effects of step therapy and other health insurance practices continues, even as the challenge of COVID-19 dominates the news. March is Autoimmune Disease Awareness Month (ADAM) and AARDA encouraged people with autoimmune diseases to join thousands of other patients, practitioners, providers, and industry partners in raising awareness and encouraging step therapy reform to assure that patients receive the prescribed medicines and care that they know are best for them.

The Safe Step Act under consideration in Congress is the focus of this effort, and waves of patients and other advocates are communicating with their Members of Congress to promote passage of the Safe Step Act. Many are also sharing their concerns and negative experiences with medically-unnecessary step therapy and other utilization management techniques with state lawmakers and officials as well.

AARDA applauds theses advocates for their outreach to decision-makers. Their messages add momentum to the significant efforts of Let My Doctors Decide, a nationwide campaign to promote understanding of step therapy and reforms that restore access to medicines and care that patients and doctors and other prescribers know will best support health and well-being.

In the first 24-hours of this advocacy initiative, over 50 advocates contacted approximately 200 legislators and officials – and the number grows every hour, to urge their support of Safe Step Act passage and comparable state reform legislation and enforcement.
Every advocate shared this message:
“As a person living with autoimmune disease, I urge you to support passage of the Safe Step Act. This legislation will help ensure my safety as a patient, by helping me access the medicines that work best for me. It will limit unwarranted step therapy practices that prolong ineffective treatments, delay treatment my doctor prescribes, to the detriment to my health and well-being.

People living with chronic illness deserve timely access to the treatments that they and their practitioners understand are best for their health and ability to participate in family, work and community life.”

What follows are examples of the unique personal perspectives added to these messages:

“I am a 41 year old professional who was recently diagnosed with a rare autoimmune disease called Dermatomyositis. It is a degenerative muscle disease, I quickly lost my ability to move and my muscles were wasting away. Due to step therapy practices I had ineffective treatment for months all while losing more and more of my mobility. I could not bathe myself or get out of bed. It is a humbling experience to become completely dependent on others. Timely access to treatment is the only way I was able to stop the progression of this illness and start on a journey towards healing.”

“My life has been forever changed by the negative effects of step therapy. Currently I am a disabled Family Nurse Practitioner because of treatment delays & “fail first” step therapy practices. If my primary medical conditions, RA, AS, & Behcet’s disease, had been treated with the best treatments without delay I might still be able to work today & not be suffering from complications as a result of step therapy. Please pass this legislation to safeguard citizens to provide better outcomes.”

“I am a 50-year old woman managing 4 autoimmune diseases along with a full-time job and a family. Each time my insurance provider changes I have lost coverage of prescription drugs that were successfully keeping my conditions controlled. This lapse in coverage caused disease flares, pain, stress, frustration and usually financial hardship to restore my treatment.”

“Practicing medicine without a license is a crime. Yet, our insurance companies do this every day in efforts to save their own money. By requiring me to be the guinea pig and try other prescriptions that my doctor did not want to try, my liver will pay the price. I ingest 15 meds a day. My doctor and I are working as a team to pursue health, wellness and improved quality of life. A larger percent of my prescriptions require extra scrutiny to be approved and then refilled on a monthly basis. These other drugs that insurance requires me to try first, stalling the plan we’ve put together.”

“I have a life threatening disease called Relapsing Polychondritis. I have suffered immensely and have irreversible damage to my trachea and bronchial tubes because my doctor was FORCED to try other drugs before the ones that could have saved my trachea and bronchial tubes. Please make this change. I have two young children who have forever lost the strength of their Mom to play and share activities they need with them. Thank you.”

“As one who has multiple autoimmune diseases, one of which took me 9 specialist and a misdiagnosis of ALS to finally get a proper diagnosis. It’s been an uphill battle, to determine which medication is best. Having a rare disease makes it even harder. So I ask you to please support the Safe Step Act.”

“Please don’t allow the medical access of people like me to be controlled by for profit insurance companies. Health Care is a human right, not a luxury.”

“I have Crohn’s disease with multiple extraintestinal manifestations, along with Hashimoto disorder, and oral lichen planus. I’m lucky to have insurance that doesn’t require step therapy, but when I was first diagnosed, I was required to use an extremely outdated therapy that has severely low numbers of compliance due to the number of pills and number of times you had to take it per day. It did nothing for me, but I had to continue using it at 100% compliance before my insurance would consider moving me up to the current gold standard therapy – which I’m successfully on today. I faced a year of continued symptoms – and continued progression (i.e., damage) of my disease.”

“Do you know what it is like to have be in pain EVERY SINGLE DAY of your life? Please let my professional physicians make the decision on my health care!”

“My son has autoimmune disease. Treatment decisions should always be made by patients and trusted health care professionals, not insurance companies or pharmacy benefit managers. It’s time to return the decision-making to doctors and patients. Which will help keep him alive!!”

“Please allow doctors and patients to decide the best treatment plan, not insurance companies. Medicines are prescribed by doctors not insurance companies for a reason, doctors are highly educated in a specialized field to treat autoimmune diseases and they see their patients routinely to provide the best possible outcome with limited setbacks. Insurance companies dictating medicine is unacceptable, wrong medication is very detrimental to a patient’s health and well-being. Unnecessary stress and anxiety as well. Thank you.”

“Please pass this legislation. It will help my son who has Addison’s Disease.”

“4 years ago, my insurance put me on a generic medication despite the doctor’s wishes. I had a terrible reaction, which made me visit the ER twice (once via ambulance). Finally, my doctor was my advocate by writing letters detailing the ordeal. The insurance company relented, but stated that we have to file paperwork every few years. This is dangerous for me, plus there are no real savings with the insurance because they have to cover emergency treatment which can be avoided if they stop questioning the doctor. To this day, my 90 day supply of that medicine is over $100 dollars, even with medical need on file. Thankfully, I still work, but I am afraid of what will happen when I retire. Please support the Safe Step Act.”

“I have multiple sclerosis (MS). Forcing patients to take a drug first not recommended by their doctor is harmful- not every drug works for everyone. If I take one of the older less effective drugs (that’s required to “fail” on first before another is covered) and new lesions form because the older drug isn’t working, I could be left with irreversible damage and symptoms because of it. What if the lesion forms in a bad spot and makes it difficult or impossible to walk? What if “failing” on a step therapy puts me in a wheelchair for life, at age 27? Or if a lesion forms in the wrong spot and it’s something that makes me unable to perform fine motor movements, making me unable to play piano and also teach?- which I am currently working on my DMA degree in (Doctor of Musical Arts) and have done since I was a child. Lesions can do that if they form in the wrong spot, and no one knows where they will pop up. That’s why it’s important to be on the best medicine you can to hopefully prevent these things. Doctors and patients should decide which medicine is best for them for long term health. It’s already hard enough to have this disease and all the other problems in life, school, and work that come with it. Why should I have to worry that any time I have to change insurance plans/companies due to school/work changing their plan that the new company could decide not to cover the drug I’m on and have to possibly go on a drug that’s known to be less effective? This leads to a lot of anxiety, and there’s enough of that already with having MS itself.”

“I am a 45 year old Father of 2 from Southern California and have been living with multiple autoimmune diseases. I was a very successful business consultant with a beautiful house and a nice 401K and savings account prior to getting sick. Now my life has changed and I am no longer able to live the same life I used to. As my journey continues I am still baffled at the medical community not allowing each individual to be treated based on their individual needs and not the requirements of the insurance companies or federal government. I strongly believe if Doctors were empowered more to help their patients, I would have been diagnosed earlier and perhaps would not be in the situation I am in today.”

“My family has experienced Side effects & undue stress of possible tainted generics that are substituted because insurance companies require “fail first” process. Please help us fix this concerning issue.”

 

AARDA remains committed to the reform of unwarranted step therapy and other utilization management practices that harm patients and interfere with the ability of practitioners to assure that their patients get the medicines and care that they-together-know are best for their health. Passage and enforcement of the Safe Step Act and similar reform legislation at the federal and state levels is critical. The time is now.

2 Comments

  1. […] we received more than 50 personal stories in letters sent to legislators about supporting the Safe Step Act. And there is still time to join in a virtual Autoimmune Walk.ADAM may be ending, but we […]

  2. […] a record number of personal stories and copies of letters to Members of Congress in support of the Safe Step Act. And, it’s no surprise that AARDA’s virtual Autoimmune Walk campaign is more popular […]

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