Petition to President Obama Launched
After speaking with Founder and President of U.S. Pain Foundation Paul Gileno,
National Pain Report
released this piece this morning.
It highlights the pain community's efforts to take action in the form of a petition. The White House Petition, created by U.S. Pain Foundation's Pain Ambassador Jeannette Rotondi, calls upon President Obama to allocate a portion of the $1 billion directed toward the opioid abuse epidemic to help the chronic pain pandemic,
through funding for improved prevention, treatment, research, provider and patient education and public awareness.
"It is important for people with pain to speak up. We are so proud of our ambassadors, and any individual with pain, who uses their voice to generate positive change for the pain community," Gileno told the National Pain Report.
LIKE, SHARE and SIGN to start the first of several steps that must be taken in response to federal policies and guidelines that impact the pain community.
U.S. Pain Reacts to Federal Policies Impacting the Pain Community
U.S. Pain Foundation has been working to unite the pain community to advocate for further pain research, fair access to all forms of care (including integrative and complementary therapies) and legislation that fulfills the needs of people with pain. While U.S. Pain continues to educate the general public and healthcare professionals to better understand chronic pain as a disease, it is imperative to discover how we, as pain warriors, can mobilize our efforts to make positive change at the federal level.
As an organization, U.S. Pain recognizes that there is a fine balance between addressing the abuse and misuse of medication and providing access to needed treatment for legitimate chronic pain patients.
That is why U.S. Pain is collecting data to gain a sense of how much information is known about the CDC Guidelines for Prescribing Opioids for Chronic Pain, FDA Opioids Action Plan and the National Pain Strategy (NPS). To move the pain community forward, toward a nation which can support and acknowledge chronic pain as a disease and addiction as a disease, pain patients, caregivers and providers are needed to weigh in on the questions below.
Rare Diseases Day 2016
We are so proud of our U.S. Pain ambassadors who took action this past Rare Diseases Day. These individuals took initiative, helping to inform and raise awareness about rare disease throughout the country.
We would especially like to thank Dawn Stancliff, Rich Garcia, and Michelle Rice for their hard work and willingness to make a difference.
A Special Thank You:
U.S. Pain would like to thank every individual that attended or live-streamed the Take Control of Your Pain: Westchester event! Thank you for spending a day becoming empowered and educated along with us...
Amazon will donate a portion of your total purchases to the U.S. Pain Foundation.
Shop Amazon Smile today!
Make a Difference This Month!
Dear Members and Fellow Pain Warriors,
Recent reaction pertaining to the new CDC Guidelines, the implementation of the National Pain Strategy (NPS) and the current coverage in the presidential campaigns has me somewhat disheartened. While pleased to hear the voices of countless pain warriors sharing personal experiences, I am discouraged by the echoing sentiment: those living with pain are wildly misunderstood with inadequate care. In fact, the pain community is misrepresented daily with biased and inaccurate statistics by mainstream media and governing officials.
This is unacceptable. Yet to manifest the change we need, it is going to take us all coming together. We must harness a message that is clear, concise and powerful. We cannot continue to let the negativity of being stigmatized cloud our ability to join together as one voice. I am here to simply state that who you are -
your journey, your story and your life - matter.
I have always said that while I am proud to be the founder and president of U.S. Pain Foundation (the largest patient-advocacy organization in America) I am first and foremost a person with pain. I take pride in the fact that I am a pain warrior. The journey to acceptance was not easy for me, just like many of you who are struggling today.
I fell into a deep depression when forced to sell my businesses. I had identified my worth by my profession as a chef; with that gone, I no longer knew who I was anymore. The pain had also put a huge strain on my already rocky marriage (ending in divorce) and my close relationship with my six siblings and parents (whom I stayed away from and did not speak to for years).
Yet it was from this horrible time in my life that I found my true calling.
I saw the need for an organization that focused on the patient perspective. It would be patients helping patients through support and community interaction. What started as a way for me to connect with other pain warriors ended up being the missing link the pain community had been searching to find for so long.
U.S. Pain Foundation helps individuals find a new, redefined purpose in life. Through the INvisible Project, Take Control of your Pain workshops, advocacy summits, ambassador and volunteer programs and an online support community called Heroes of Healing (to name a few!), we strive to connect the pain community so each person with pain feels supported, validated and recognized.
After my personal hardships, I know how important it is for a person with pain to feel heard and understood. I still remember how I used to live
in pain every day; thankfully, I now choose to live
with pain every day. This is something I want every person who is suffering to recognize - you can live with it, you are not alone and you do matter.
It is my unyielding belief that each one of us plays an important role in generating positive change. Too often, we discredit our own ability to contribute to something great. We tell ourselves that we are in too much pain or we do not have anything valuable to offer. We are defeated before we even begin, mainly because of being forgotten and not listened to for far too long.
This is a travesty. By disregarding how powerful we are, we are giving away our strongest asset: our power. I know if I was able to find my way through my pain then anyone can do it too. I did nothing special: except I did not let pain win. I reclaimed my life.
So how does this tie in to our current landscape?
The stories from concerned, legitimate people with pain are missing. Instead, most coverage showcases the defensive patient. I get the angry reaction. I understand feeling like no one cares or is listening. Trust me, I am mad too. I am dismayed that so many roadblocks exist for people with pain. First and foremost is the lack of validation for those suffering. Society minimizes the hardships while marginalizing the pain of that which they do not understand or cannot see.
To make the situation even more horrifying, the majority of patients do not have access to the appropriate treatments. It is a disgrace to know medical professionals are forced to decide to follow the oath they took to do what is best for their patients or follow guidelines provided to them by the government due to fear of losing their medical license. Furthermore, these same clinicians hands are tied because other treatments that hold much potential to bringing relief -
such as integrative and complementary therapies - are not covered or paid for by health insurance companies. So despite what a medical provider feels is the best course of treatment for his or her patient, they either cannot prescribe or recommend it, or worse, refuse to do so. It's a sad day for the American people when our own medical system will not do what is right for patients.
However, lashing out against rhetoric is not going to solve this tsunami of a problem. In my opinion, the community needs a solid, strong, unified voice. A message that is honest and real. A call to action that is needed and obtainable. Those with pain, those caring for people with pain, those invested in pain care must ALL rally together in unison to create the change we need. It is our time to channel a collective energy toward a productive outcome.
For starters, we need to see our worth. As a community of people living with pain, we must recognize that our lives matter. Becoming empowered is key. It is only then that we can properly advocate for our fellow pain warriors and ourselves. In turn, we invoke a positive, productive conversation about chronic pain filled with compassion, knowledge and courage that commands national attention.
What can we do?
Perhaps a White House petition asking that part of the $1billion granted toward the opioid epidemic is utilized to help the chronic pain pandemic in America. Or how about educating the public about the difference between a person who seeks relief from pain and the person who is abusing medication or is dealing with the disease of addiction. Both people living with addiction and chronic pain are brutally stigmatized and inadequately treated, but both groups of people need different forms of therapy to heal. There is a difference, and that is not being discussed in today's media.
We need to stand strong, holding the medical system (clinicians, health insurers, pharmaceutical companies, government) accountable for access to the best care and treatment. For those who have received unethical treatment, file a complaint. To others who fear changes brought about by the CDC Guidelines or have hope because of the National Pain Strategy, write to your lawmakers and tell them how your life is impacted due to pain. Each of us deserves to be treated for his or her pain individually, following the best course of treatment deemed by a medical provider. If this is not happening, then that is not right. People with pain must have access to all therapies and treatments, and our government should not only support that but also mandate that such action occurs.
Complaining to each other is not going to generate positive change. Action will. It is time to turn this frustration we feel into action. Will you join U.S. Pain Foundation and myself in advocating for further pain research, access to all forms of care (including integrative and complementary therapies), and legislation that fulfills the needs of people with pain and help the general public and healthcare professionals better understand chronic pain?
What could the outcome be?
I believe the change we seek, deserve and need will ultimately come from us. It is our personal experiences that hold the most clout, which is why it is imperative that we, the pain community, find our collective voice and unite. So to those who feel no one is listening, I am. You are not fighting this battle alone. U.S. Pain Foundation is here to offer you hope, support and information. And on behalf of the organization, I am imploring you to join our efforts in unifying together for the benefit of those living with pain. Help make it easier for future pain warriors to have needed access and treatment. My wish, my hope, is that no one has to go through the hell countless of us have to or had to go through to receive optimal pain care and the best treatment options available. I have hope that our futures will be brighter because we will see to it that they are. This is our moment to stand as one, to be unified and to make the change we need, the change we desire and the change that is right.
We need your help more than ever now. Please help us help you and change the climate for pain patients across the country. Thank you for your help in advance. We could not be who we are without the unwaivering support and help of individuals like you.
Wishing you all a low-pain and high-spirits day,
Founder & President, U.S. Pain Foundation
CALLING ON YOU!
Shining the State Advocacy Spotlight on Step Therapy
As reported by U.S. Pain in a recent advocacy alert, Indiana pain patients will be able to receive treatments more timely thanks to Governor Mike Pence singing Senate Bill 41 into law. The bill, titled
Pharmacy Benefits, requires a state employee health plan, an accident and sickness insurer and a health maintenance organization to make available a procedure for a covered individual's use in requesting an exception to a step therapy protocol used by the state employee health plan, accident and sickness insurer, or health maintenance organization with respect to coverage for certain prescription drugs including time frames for a determination concerning an exception and reasons for granting an exception. Although this bill will not eliminate step therapy practices from taking place, the law's language requires specific actions be taken by insurers. This will provide easy access of information for a patient's physician to access, including how to override step therapy protocol.
West Virginia's Governor followed in Indiana's footsteps a few days ago, also signing legislation that will place controls on the step therapy protocol. Governor Tomblin's signing of HB 4040 is promising to other states whose pain patients are in need of receiving their treatment in a timely manner and as prescribed by their provider,
not by their insurance company.
As there have been recent questions from U.S. Pain members and social media followers concerning Step therapy and U.S. Pain's position, we felt it important to provide a quick breakdown as to what this practice is and the organization's stance on the issue.
What is Step Therapy?
Step Therapy (
also known as fail first) is a technique that insurers commonly use to help control drug costs. The practice requires a patient to fail first on a series of treatments, even if a patient's physician believes a different therapy is medically in the best interest of their health condition.
Implications of Step Therapy
By limiting the array of treatment options, both physicians and chronic pain patients are forced to compromise their treatment decisions in a way that is dangerous, time consuming and more expensive in the long run. This insurer practice can lead to significant, negative consequences for the patient. For example, the drug sequences required under step therapy are not based on the medical profile of a specific pain patient or on assessments provided by a patient's treating physician. Rather, these sequences are based on cost and on general expectations about potential treatment responses. Also, insurers may require patients to try the same drug repeatedly and over any length of time, as the law does not place any constraints on the duration of a step therapy protocol. That means patients may be obligated-for an indefinite period of time-to delay taking the medication that was initially prescribed by their health care providers.
U.S. Pain Foundation's Position Regarding Step Therapy
The organization believes that when step therapy stands in the way of treatments that are medically necessary, patients and their health care providers should have access and a clear and speedy process for seeking an exemption from an insurer's step therapy protocol.
For More Information...
Step Therapy Around the Country
U.S. Pain has been active in advocating for bills which would create more transparency for a pain patient's physician seeking to override step therapy protocols. Below, find some of the states where bills are gaining momentum.
House Bill 2029
, to amend chapter 376, RSMo, by adding thereto four new sections relating to step therapy for prescription drugs was passed out of the House on March 29th! Sponsored by Representative Denny Hoskins, this legislation creates additional safeguards for the chronic pain patient in order to receive treatments in a more timely fashion. Advocates have been asked to request that Senate Pro Tem Ron Richard sent HB 2029 to the Senate Veteran's Affairs and Health Committee.
House Bill 5928
, Managed Care Act; amends the Managed Care Reform and Patient Rights Act and sets clinical review criteria that must be used to establish step therapy protocols.
Assigned to Insurance Committee on 3/23/16.
HEARING: April 6th, 2016 at 11 AM in Room D-1, Stratton Building, Springfield, IL.
Senate Bill 3037
, Managed Care Act; House companion bill filed by Senator Julie Morrison. Provides certain exceptions upon which a step therapy override will always be provided.
Assigned to Insurance Committee on 3/8/16.
CALL TO ACTION IN ILLINOIS: Feel free to use social media to start promoting your support for these bills! Follow @US_Pain on Twitter and Retweet our post about these bills! You may also copy/paste the following:
#IL Lawmakers! #IN did the right thing for patients by passing #SB41 to curb #steptherapy. Do the same for IL patients! Pass #HB5928
Great news 4 #IN #Patients. #SB41 was signed by @GovPenceIN which will help curb #steptherapy protocols. #IL should be next! Pass #HB5928
, to amend insurance law, in relation to the regulation of step therapy policies.
Introduced by Assemblyman Matthew Titone, this bill requires clinical review criteria be used to establish step therapy protocols be based on clinical practice guidelines endorsed by independent experts, based on high quality studies, and be created by a transparent process; requires that patients and health care providers have access to a clear and convenient process to request a step therapy exception determination.
*RELATED BILL: SB 3419.
U.S. Pain Foundation is part of a step therapy coalition in NY to ensure that these proposed bills receive the support of lawmakers in order for the legislation to become law.
, Health insurers, Medicaid-step therapy protocols. The bill makes several revisions to existing Revised Code, including more transparency in the review process by the health plan issuer, which must note that the clinical review criteria used in step therapy protocols for prescription drug meets the requirements set forth of the proposed legislation. The insurance company must provide patients and prescribing practitioners access to a clear and convenient process to request a step therapy exemption.
Senate Bill 341
, Allowing Step Therapy for Medicaid patients. This bill speaks to the creation of an electronic pharmacy claims management system. That system would not be used to require a recipient that has utilized or failed with a drug prior to allowing the patient to receiving and product or therapy recommended by his/her physician if the recommended therapy commenced on or before July 1, 2016.
*U.S. Pain is in the process of collecting patient stories as they relate to step therapy practices. If you have been impacted and reside in one of the mentioned states above, please email:
(Subject: Step Therapy Patient Story)
Light Up The Landmark
U.S. Pain is proud to announce a new addition to our
Beautify in Blue campaign that takes place during September's Pain Awareness Month, we are going to
Light Up The Landmark
Lets turn the night sky blue on
Friday, September 9th
. We are asking for everybody to reach out to office buildings, town halls, monuments, bridges, town squares, and any other locations you can think of, to turn their lights blue on
By turning their lights blue it will help unite the over 100 million Americans who live with chronic pain. If you are interested in helping turn the sky blue on September 9th, please contact Casey Cashman at:
State Proclamation Program: Can YOU Bring Pain Awareness Month to your State, City or Town?
Yes! U.S. Pain Foundation has been extremely active in ensuring our communities, made up of physicians, caregivers, lawmakers and fellow pain warriors, know that September is Pain Awareness Month. How? Through awareness events, existing programs, outreach and grassroots efforts, empowering patient workshops and the like. But we have also been calling upon our local governing bodies as well as our Governor's offices to officially and publicly recognize the pain community in September.
That is why U.S. Pain is, once again, providing our Pain Ambassadors, Advocates, volunteers and members the opportunity to file an already pre-written proclamation. The proclamation designates September as Pain Awareness Month, but it does so much more. It recognizes at the state and local level the importance to continue conversations that surround the pain community. It is another opportunity to let our voices be heard to eliminate the stigmas associated with chronic pain. Will you join this program within our Pain Awareness Month Campaign?
HOW TO JOIN IN THIS EFFORT: Send an email to
stating that you would like to take the lead in your state to file the proclamation request. U.S. Pain has steps that will be sent to you that makes the filing process easy! By following the steps, the organization can keep a clear tracking system of who is filing on behalf of the state. If someone has already been assigned the proclamation filing designee, you can STILL participate! We encourage that you file the request to your municipal government (town council, Mayor's office, Board of Selectmen). Support will be provided for you along the way to ensure you feel comfortable with the proclamation request.