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YOUR RIGHTS ARE OUR PRIORITY

In the United States, there are legal mandates that state medical centers must follow existing guidelines in the Americans with Disabilities Act (ADA), Section 504 of the Rehabilitation Act (RA), and Section 1557 of the Patient Protection and Affordable Care Act (ACA). North Carolina has recently passed legislation that mandates disabled patients have rights to have a caregiver with them during medical procedures, treatments, doctor appointments and surgeries, even during a pandemic, as stated in the SB 730: No Patient Left Alone Act


The United States Department of Health and Human Services’ Office for Civil Rights states specifically that hospitals must “keep in mind their obligations under laws and regulations that prohibit discrimination on the basis of disability” and that the federal disability rights laws “remain in effect” even during the COVID-19 pandemic.

COVID: KNOW YOUR RIGHTS

SIGN THE PETITION

Petition to Expand the SB 730: 

No Patient Left Alone Act

The Americans with Disabilities Act states in Titles II and III that health care facilities are mandated to provide reasonable accommodations for persons with disabilities. These accommodations include the presence of a caregiver/patient advocate during medical events who can provide the patient with necessary support services, including communication with healthcare providers, support managing mental or physical health and other unique medical needs such as assistance with medical devices.


Legally, no medical facility can deny a disabled person’s right to a caregiver/patient advocate present, even during the COVID pandemic.


If you have been denied these rights, print the DISABLED COVID RIGHTS PDF and provide it to the medical facility who has denied you

CIAAG and Adrenal Alternatives Foundation have joined together to address the serious issues COVID-19 restrictions are having on millions of citizens with rare diseases and/or chronic illnesses.

Patients with continuous ongoing treatments such as dialysis, chemotherapy and IV infusion medications, now forced to be alone during these already difficult treatment sessions. This increases their suffering and has potential mental health implications, which then can adversely impact their overall health and wellbeing. 


There are great concerns regarding the increased potential for patient endangerment and medical errors in patients with rare disease protocols without caregivers and advocates present.

Facilities, hospitals and treatment centers are citing COVID-19 as the rationalization behind restricting visitor access are not complying with the requirements of the Americans with Disabilities Act (ADA) which clearly states in Titles II and III that health care facilities are mandated to provide reasonable accommodations for persons with disabilities. 


These accommodations can include visitors who provide the patient with necessary support services, including communications, behavior/emotional support, and support managing the patients medications and other unique needs. There are several federal disability civil rights laws that apply to hospitals including, but not limited to, Title III of the Americans with Disabilities Act (ADA), Section 504 of the Rehabilitation Act (RA), and Section 1557 of the Patient Protection and Affordable Care Act (ACA). All of these statutes protect people with disabilities yet facilities, medical centers and hospitals across the nation are denying chronically ill patients a basic human rights of support and comfort of a loved one during medical experiences, citing COVID-19 restrictions as the reasoning. The ADA, RA, and ACA laws are still enforceable during the the COVID-19 pandemic. The United States Department of Health and Human Services’ Office for Civil Rights issued a statement specifically reminding hospitals that they must “keep in mind their obligations under laws and regulations that prohibit discrimination on the basis of disability” and that the federal disability rights laws “remain in effect” even during the COVID-19 pandemic.


Bill Proposal: Expanding the SB 730 – No Patient Left Alone Act 


BILL ANALYSIS: S730 contains the "No Patient Left Alone Act" which ensures the visitation rights of hospital patients during a period in which a disaster, emergency, or public health emergency has been declared.


GOAL: Proposing expansion on the No Patient Left Alone Act, originally passed in North Carolina. We are proposing a standard protocol outlined in a legislative bill that will mandate nationwide protocols that allow chronically ill patients to have a caregiver with them during medical procedures/treatments. 


SOLUTION: Standard legislation that mandates medical centers must follow existing guidelines in Title III of the Americans with Disabilities Act (ADA), Section 504 of the Rehabilitation Act (RA), and Section1557 of the Patient Protection and Affordable Care Act (ACA). There needs to be legislation that allows chronically ill patients to have a caregiver with them during medical procedures, treatments and surgeries even during a pandemic.

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CIAAG EVENTS & ACTIVITIES


CIAAG's Work with the VNGOC at the United Nations Office of Drugs and Crime

CIAAG Founder Lauren Deluca spoke at the 61st Commission of Narcotic Drugs 4th Intersessional Meeting at the United Nations Office of Drugs and Crime - Thematic Debate


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CIAAG Founder Lauren Deluca spoke at the 62nd Commission of Narcotic Drugs 6th Intersessional Meeting at the United Nations Office of Drugs and Crime - Thematic Debate


OUR ACTIVITIES

November 17, 2021 CIAAG published their exclusive report, Ethical Guidance in Public Private Partnerships: Gaps, Inconsistencies & Recommendations which outlines the primary issues and recommendations to address the negative outcomes from the US Public-Private Partnership initiatives in healthcare.


October 26, 2021 CIAAG Founder, Lauren Deluca, was recognized by the International Society of Female Professionals for her work advocating for patient rights.


September 9, 2021 CIAAG joined the United Nations Office of Drugs and Crime Civil Society Unit via the UN Convention Against Transnational Organized Crime (UNTOC) & the UN Convention Against Corruption (UNCAC) 


July 16, 2021 CIAAG remitted formal comments to the CDC Board of Scientific Counselors for the National Center for Injury Prevention and Control regarding their initial  "Observations of the Opioid Workgroup" for the 2016 CDC Guideline for Prescribing Opioids. 


June 30, 2021 CIAAG Founder, joined Your Freedom Hub: "War on Pain Patients" to present the National Pain Strategy: Is It Working? A CIAAG exclusive analysis of the historical steps surrounding the creation of the National Pain Strategy and it's related programs and their impact on society since being implemented.   You can see the recording here.


June 11, 2021 CIAAG Founder, Lauren Deluca, was accepted as a member of the International Society of Female Professionals which is one of the World's Leading professional associations for women. 


May 6, 2021 CIAAG submitted an Appropriations Request to the House Subcommittee on Labor, Health & Human Services, and Education asking for monies to be allocated to the creation of an Oversight Committee and to fund impact studies to determine the social and health implications on the recent healthcare changes on the public health and well-being.


May 2, 2021   CIAAG Founder, Lauren Deluca, was featured on Fox News, Boston commenting on the study: One in Five People Suffer from Chronic Pain: The Debate Continues on the Proper Role of Opioid Analgesics  


May 2, 2021 CIAAG presented to the Chapman Spoonie's at Champman University where she hared CIAAG's Founding story, current research findings and our Organizational goals to help advocate for people to receive individualized health care, free from discrimination and bias. 


March 15, 2021  CIAAG partners with Adrenal Alternatives on a joint campaign to advocate for disabled patients to have a right to caregivers during the COVID pandemic.


February 23-24, 2021  CIAAG joined the International Publication Planning Meeting in presenting, "The Pursuit of Public Health & How to Build Trust in the Industry" and "Understanding the Powerful Impact of Trusted Voices".


February 7, 2021 CIAAG President, Lauren Deluca, joined the "Patient Advocacy Show" with Academia and students from Touro University discussing the new rule from HHS  rule in the 2021 CPT manual regarding guidelines for office and outpatient Evaluation and Management (E/M) Services. 


February 1, 2021 CIAAG President, Lauren Deluca and Vice President, Shasta Rayne Harner both endorse "Open Letter to the Acting Director, Agency of Healthcare Research and Quality"  authored by Subject Matter Expert in Public Policy, Richard A. Lawhern, PhD, advising that a formal complaint was submitted to the House of Representatives Committee on Government Oversight and Reform, on grounds of fraud and abuse in regards to the validity or lack thereof for methods applied in Comparative Outcomes Review 240.


December 10, 2020:  CIAAG sends a copy of "Addressing the Tri-Crisis" to the Biden/Harris Administration.  In this document, we outline goals and recommendations that we would like to see the administration take within the first 100 days of office.


October 21, 2020:  CIAAG President Lauren Deluca addressed the United Nations at the 3rd Intersessional Meeting of the 63rd United Nations Commission of Narcotic Drugs in Vienna, Austria.  


September 24, 2020: CIAAG shared the results of a Academic study, Capturing Well-being While Immunocompromised, which they helped facilitate as Community Partners with the University of Pennsylvania, to help show the impact of COVID-19 on individuals living with auto-immune diseases. 


September 10, 2020: CIAAG issued a press release announcing that we joined the United Nations VNGOC on Narcotic Drugs


August 29, 2020:  CIAAG issued a press release for their exclusive research report, "A Crisis Exploited," which explores the professional and financial ties of high powered individuals, Academia, Advocacy Organizations, Pharmaceutical Organizations and Data Analytic Companies in relation to the pain studies being conducted/funded by grant monies at the National Institutes of Health. 


June 25, 2020:  CIAAG joined 72 organizations endorsing a joint proposal for equitable access for treatments, vaccines and diagnostics, resulting from the ACT-Accelerator.


June 15, 2020:  CIAAG Vice President, Shasta Rayne Harner was featured on The Rapp Report where she and show host, Branden Rapp discuss Violation of a Nation.


May 14, 2020:  CIAAG sent a joint letter to CMS requesting communication with the states to permit 90 day supply of schedule II medications during COVID19 pandemic.


May 4, 2020:  CIAAG joined 58 organizations endorsing a joint letter urging to accelerate the development, availability, and equitable access to safe, quality, effective and affordable diagnostics, therapeutics and vaccines against coronavirus.


April 26, 2020:  CIAAG Vice-President, Shasta Rayne Harner  was featured in Pharmacist Steve's blog, Shasta Rayne calls out the bureaucrats on their calculated war on patients.


April 10, 2020:  CIAAG endorsed a joint letter, COVID-19: Principles for Global Access, Innovation and Cooperation, promoting access for all, solidarity and global cooperation toward the common goal of treatment and vaccinations to address the global health pandemic we are facing as a result of the COVID-19 outbreak. 


February 25 - 26, 2020:  CIAAG Vice-President, Shasta Rayne Harner, joined The International Publication Planning Meeting to discuss patient advocacy with a clinical researchers from around the globe. Her presentation, Words Matter, focused on research and its direct implications on medical care, treatments and the overall care a patient receives and how it is vital for researchers to take care with the language they use in their work. 


November 19, 2019:  Our team met with a Massachusetts State Representatives office to discuss the current state of public health policy and the negative consequences of our lawmakers relying on unqualified individuals to advise on healthcare policy and pain management. 


November 11, 2019:  CIAAG Members joined in our "Call to Action" to email lawmakers in all 50 states sharing our concerns regarding unqualified individuals, with personal bias and agendas, to be advising our lawmakers on healthcare policy and public health changes. Our members sent emails to every single lawmaker in their home state along with a copy of a recent publication, "Damaging State Legislation Regarding Opioids: The Need To Scrutinize Sources Of Inaccurate Information Provided To Lawmakers" which outlines this very issue. 


October 18, 2019:  CIAAG Founder, Lauren Deluca, addressed the United Nations at the 6th Intersessional Meeting of the 62nd United Nations Commission of Narcotic Drugs in Vienna, Austria.  CIAAG highlighted the need for balance in the US strategy on combating the illicit drug crisis. Focusing in particular how the regulatory approach  to combat the crisis is negatively impacting patient care and public health/safety. 


September 18, 2019:  CIAAG joined a number of organizations requesting amendments to the Consumer Financial Protection Bureau proposed medical debt collection rule


September 8, 2019:  CIAAG Vice President, Shasta Harner, joined host Giazilla Rawrr on Blunt Force where they discuss living with rare disorders and daily, debilitating pain, and what it feels like to have our dignity, ability to function, and quality of life stolen from us due to regulatory/policy changes. 


July 15, 2019:  CIAAG joined 151 organizations, associations and institutions in endorsing position statement: "Decision by the World Health Organization (WHO) to Withdraw Guidance Documents" – A Global Palliative Care Initiative.


 June 17, 2019:  Our team met with Massachusetts Department Health & Human Services Chief of Staff to discuss our CIAAG's work in the local community as well as activities being undertaken at the state level that may have a negative impact on patient care and access to life sustaining opioid analgesics. 


June 13, 2019:  CIAAG launched their video blog "World of Pain" where hosts Lauren Deluca & Shasta Rayne Harner educate the community on all things chronic pain and the news. 


June 9 - 11, 2019:  Our team joined the "International Conference on Opioids


June 8, 2019:  CIAAG was featured in RSDSA Summer Newsletter who featured the founding of CIAAG, our trip to the United Nations, the State Leadership Program and more!


May 28, 2019:  CIAAG joined 50 Organizations in an open letter to the Delegates at 72nd World Health Assembly on Transparency Resolution Negotiations.


May 15, 2019:  CIAAG Founder, Lauren Deluca, joins Matt Connarton’s UNLEASHED 95.4 WMNH - Manchester NH, where they get real about America’s pain crisis and the illegal clinical trial running through our healthcare system.


April 28, 2019:  CIAAG Founder, Lauren Deluca, joined Michael Finney of ABC7 KGO News Team on Consumer News. They discuss the 2016 Centers of Disease Control & Prevention’s controversial Opioid Prescribing Guidelines and their devastating impact on consumer access to safe medical treatment.


April 24, 2019:  CIAAG issued a Press Release: “CDC renounces harmful opioid guidelines.”


April 24, 2019:  CIAAG Founder, Lauren Deluca, was featured in USA Today: “Feds issue new warning to doctors: Don’t skimp too much on opioid pain pills


April 24, 2019:  Centers for Disease Control & Prevention issued a statement “CDC Advises Against Misapplication of the Guideline for Prescription Opioids for Chronic Pain.”


April 21, 2019 to April 23, 2019:  Our team joined the 2019 Rx Drug Abuse & Heroin Summit. (More info forthcoming about this event)


April 12, 2019:  CIAAG Press Release & Dossier: “Violation of Nation” was released publicly at 12:00 a.m.


April 9, 2019:  Department of Justice issued a Press Release: Indivior, Inc., Indicted for Fraudulently Marketing Prescription Opioid


April 9, 2019:  Food & Drug Administration issued a Press Release: FDA identified harm reported from sudden discontinuation of opioid pain medicines and requires label changes to guide prescribers on gradual, individualized tapering

April 8, 2019 to April 9, 2019:  Our team traveled to Washington, D.C. to meet with various Congressional and Senatorial Committee Leaders to discuss our findings in "Violation of a Nation" and request a safety announcement against forced tapering.

March 27, 2019:  CIAAG Director of Research, was featured in PennLive: Opioid epidemic’s other victims: Patient in pain who can’t find relief where he shared his story of struggling with accessing management services for his co-morbid chronic illnesses.


March 13, 2019:  Our team met with Senator Kamala Harris's staff to begin conversations about CIAAG’s work and the untreated pain crisis in America. We shared concerns regarding potential financial incentives motivating public health changes as well as the direct impact it's having on the patient population.


March 7, 2019:  CIAAG Founder, Lauren Deluca, joined BATV’s Janine Zagel on “Foundations of Change” where they discussed the current state of affairs for people living with chronic illness.


February 12, 2019:  Our team met with Kansas Governor Laura Kelly, Chief of Staff, to discuss the untreated pain crisis in America. We discussed the impact the current regulations are having on healthcare services and patients across the nation. The governor's office has no Opioid Task Force in place nor one planned as their primary substance of abuse is methamphetamine. The governor’s office is keenly aware of how the new federal regulations are impeding patient care.


February 5, 2019:  Our team met with Massachusetts Representatives regarding Senate Bill 1001, An Act relative to removing barriers to non-opioid pain management, Senate Bill 332 An Act strengthening prescription drug safety and drug stewardship.


January 23, 2019:  Our team met with Michigan Congress Members to discuss our Organizations work for the chronically ill and disabled. We discussed how the current approach to the Opioid Epidemic is in fact now creating a crisis of untreated pain leading to increases in patient abandonment, abuse and a drastic rise in suicides in America.


January 22, 2019:  CIAAG joined 70 Organizations in a Joint-Letter to Congress expressing our concerns regarding provisions included in the proposed NAFTA 2.0 (referred to by the Trump Administration as the United States-Mexico-Canada Agreement); which would entrench and expand prescription drug monopoly protections, thwart competition and undermine efforts to expand access to affordable medicines.


January 22, 2019:  CIAAG joined 19 Organizations in a Joint-Letter to House health care leaders urging their support Medicare negotiate prices, stop Monopoly abuses and make drug manufactures and pharmacy benefit managers transparent.


January 21, 2019:  Our team meet with Oregon Senator Ron Wyden's Health Staff to discuss his correspondence to Secretary Alex Azar where the HHS Inter-Agency Task Force for Pain is being questioned by his office regarding transparency and in particular, his office's concerns the Task Force’s focus on the damaged caused by CDC Guidelines.


January 5, 2019:  CIAAG was featured in Tears of Truth, which highlighted the recent news coverage by Fox News as well as our Organizations participation in the 61st Commission on Narcotic Drugs, at the United Nations headquarters in Vienna, Austria.


December 20. 2018:  CIAAG Founder, Lauren Deluca, was featured in several publications including, Hampshire Gazette, MetroWest Daily News, Lowell Sun, Sential & Enterprise, Milford News, Boston Business Journal & Boston University News: State Rep. pushes opioid tax bill in ongoing fight against crisis in Massachusetts


December 12. 2018:  CIAAG Founder, Lauren Deluca, was featured in Fox News: Health experts offer solutions for the unintended consequences of opioid crackdown


November 26, 2018:  CIAAG Founder, Lauren Deluca, was featured in The Fix: The Other Side of the Opioid Epidemic: Chronic Pain Patients


October 29, 2018:  CIAAG has joined 45 Organizations urging Congressional leaders calling on them to reject any measures that would increase drug costs for consumers, including rolling back the provisions in the Bipartisan Budget Act of 2018.


October 18, 2018:  CIAAG & Time Thread Studio’s Presents Trailer to our new Documentary - Untreated: The Healthcare Crisis. Fundraising Goal $20,000 by 12/18/2018.


September 27, 2018:  CIAAG Founder, Lauren Deluca, addressed the United Nations Office on Drugs & Crime in Vienna, Austria. Thematic Debate Transcripts.


September 22, 2018:  CIAAG Founder, Lauren Deluca, Op-Ed was featured in Times Union: “Chronic Pain Requires Access to Medication


September 21, 2018:  CIAAG Founder, Lauren Deluca, hosted a booth at the “Abilities Expo” in Boston, Massachusetts.


August 28, 2018:  CIAAG Founder, Lauren Deluca, was featured in Politico: “How the Opioid Crackdown is Backfiring


July 20, 2018:  CIAAG Founder, Lauren Deluca, was featured in Part 3 of a three part series by The Social Exchange “Where the Story Meets Pain” by host Zach Rhoads.


July 3, 2018:  CIAAG Founder, Lauren Deluca, was featured in USA Today, “Chronic Pain Patients, overlooked in opioid crisis, getting new attention from the top at FDA


June 27 - June 29, 2018:  Our team joined the “Affordable Medicines Now” Conference Hosted by Public Citizen.


June 26, 2018:  CIAAG Founder, Lauren Deluca, was featured in the National Pain Report “FDA Hearing Draw Chronic Pain Community - Now What


June 26, 2018:  CIAAG Founder, Lauren Deluca, submitted to the “Senate HELP Committee” our proposed amendment “Equal & Fair Access to Palliative Care” to be added to the “HR-6 SUPPORT Act


June 26, 2018:  CIAAG Founder, Lauren Deluca, met with Senator Claire McCaskill’s health care staff to discuss the untreated pain crisis in America as well as Senator McCaskill’s introduction of Senate Bill 3000 “Pain Advocacy Transparency Act


June 15, 2018:  We introduced “Words of Pain” a blog run by the chronic pain community, in hopes of enlightening the public of the realities of chronic illness pain.


June 7, 2018:  Chronic Illness Advocacy & Awareness Group joined 45 Organizations in a Joint Letter to the Honorable Charles E. Grassley and the Honorable Dianne Feinstien in their role as Chairman and Ranking Member of the “Committee on Judiciary” in support of the “CREATES Act." The Creates Act is a bipartisan, market-based reform that will speed the introduction of generic medications to help restore the balance between innovation and affordability of medications.


May 25, 2018:  Worcester Speaks Out - with Host Matt Taylor


May 8, 2018:  Barbara & You – America’s longest running public access talk show (41 years).


May 6, 2018:  Foundations of Change: Episode 2 - with host Janine Zagel


April 11, 2018:  CIAAG founder Lauren Deluca was featured as a guest expert during an interview with “AlphaAdvocates” Lauren lead an LIVE educational seminar to over 40 start-up healthcare organizations, educating them on the facts verse fiction in the face of changing regulations in our healthcare. In addition, she presented various ways other Non-Profit Organizations as well as patient advocates can effectively advocate for themselves and the community they serve.


April 2, 2018:  Our team joined and attended 2018 National RX Drug Abuse & Heroin Summit.


March 30, 2018:  CIAAG Founder, Lauren Deluca, was a featured guest on “The Jordan Levy Show”


February 6, 2018:  Foundations of Change: Episode 1 with host Janine Zagel


February 1, 2018:  CIAAG Founder, Lauren Deluca, was featured in a Prevention Magazine article: “The Other Opioid Crisis” by Peter Moore.


January 16, 2018:  CIAAG Founder, Lauren Deluca, testified at the Massachusetts Statehouse regarding House Bill 4033 – “An Act Relative to Combating Addiction, Accessing Treatment, Reducing Prescriptions and Enhancing Prevention”


January 15, 2018:  CIAAG joined over 60 organizations and independent groups urging the U.S. Senate to reject Alex Azar as Secretary of Health & Human Services. Azar has a record of driving up domestic prescription drug prices which would negatively impact our community.


December 19, 2017:  Founder, Lauren Deluca, testified at the Massachusetts Statehouse regarding House Bill 1181 & Senate Bill 1183 – “An Act Relative to Pain Assessment & Management in a Healthcare Facility”


December 4, 2017:  CIAAG joined over 40 organizations working collaboratively in Washington, D.C. on grassroots efforts to promote universal health care and a single payer healthcare system, as well as price caps on prescription drugs, palliative care and legal protections for chronic illness/pain and disabled patient access to pain management.


November 6, 2017:  Chronic Illness Advocacy & Awareness Group dba CIAAG was Founded.

ISSUES