PatientView | 來自患者組織的美國洞察：在定價桌上佔一席之地

患者群組目標

以下百分比顯示了91個患者群體如何與監管機構互動並倡導患者利益。由於受訪者可能在多個領域中有所代表，百分比總和可能不等於100%。

互動

病人組織如何與藥物監管機構互動

了解目標的含義

32 提及

17 提及

15 提及

11 提及

5 提及

1 提及

行動與倡議

病人組織如何獲得藥物

了解目標的含義

27 提及

22 提及

3 提及

2 提及

英文文字	治療領域	類別	已接觸患者	地理覆蓋範圍	監管參與	受訪者
Our community members participate in this at an individual level, and as an organisation, we meet with industry policy holders.	癌症 > 癌症：女性	監管合作夥伴關係 > 與監管機構合作	10,000	International	Rarely	119028011659
We collaborated on an externally-led Patient-Focused Drug Development meeting with the FDA [Food and Drug Administration] in 2025.	神經系統 > 多發性硬化症	監管合作夥伴關係 > 與監管機構合作	100,000	National	Rarely	119039458452
We engage in education, guidance, and institutional dialogue initiatives to promote informed, equitable decisions that place community well-being at their centre.	患者倡議 > 訓練	監管合作夥伴關係 > 與監管機構合作	100,000	International	Regularly	119063146174
Through written comments, sign-on letters, and participating in roundtable meetings where drugs are being discussed.	癌症 > 癌症：肉瘤	監管合作夥伴關係 > 與監管機構合作	10,000	International	Sometimes	119064713792
Just recently hosted an EL-PFDD [Externally-Led Patient-Focused Drug Development] meeting and attended FDA [Food and Drug Administration] meetings with industry partners.	罕見 > 罕見疾病：遺傳性	監管合作夥伴關係 > 與監管機構合作	5,000	International	Regularly	119065526277
... We work closely with the FDA and other drug agencies, like EMA [European Medicines Agency] and PDMA [Pharmaceuticals and Medical Devices Agency], to look at endpoints for drug trials, or how to improve drug trials to benefit sponsors and patients.	腎臟 > 腎臟疾病	監管合作夥伴關係 > 與監管機構合作	100,000	National	Regularly	119070696943
Participation in activities like PDUFA [Prescription Drug User Fee Act] and MDUFA [Medical Device User Fee and Modernization Act] discussions.	罕見 > 罕見疾病：大多數類型	監管合作夥伴關係 > 與監管機構合作	100,000	National	Rarely	119078556821
We have a policy committee and weigh in on public policy issues through education and advocacy.	慢性 > 緩和治療	監管合作夥伴關係 > 與監管機構合作	100	National	Regularly	119078649119
Discussions about review and approvals of new screening technologies.	癌症 > 癌症：大多數類型	監管合作夥伴關係 > 參與健康技術評估（HTA）及報銷審查	100,000	National	Rarely	119045117950
Our organisation actively advocates for the interests of the individuals and communities we serve before regulatory authorities and decision-making bodies on matters relating to medicine access, affordability, and coverage recommendations.	患者倡議 > 訓練	監管合作夥伴關係 > 參與健康技術評估（HTA）及報銷審查	100,000	International	Regularly	119063146174
... Our government relations team responds to comment letters and regularly talks with CMS [Centers for Medicare & Medicaid Services] to ensure best outcomes.	腎臟 > 腎臟疾病	監管合作夥伴關係 > 參與健康技術評估（HTA）及報銷審查	100,000	National	Regularly	119070696943
Our organization has participated in responses to ICER [Institute for Clinical and Economic Review].	呼吸系統 > 肺部疾病	監管合作夥伴關係 > 參與健康技術評估（HTA）及報銷審查	100,000	International	Rarely	119078556838
We are typically advisors on ICER [Institute for Clinical and Economic Review] reviews.	風濕性 > 狼瘡	監管合作夥伴關係 > 參與健康技術評估（HTA）及報銷審查	100,000	National	Regularly	119082751826
Testifying on behalf of pharma & device companies in front of the FDA [Food and Drug Administration].	移植 > 移植：心臟及肺部	監管合作夥伴關係 > 出席/主持與政策制定者/監管機構的會議	5,000	Local	Regularly	119014633092
Discussions with FDA [Food and Drug Administration].	一般健康 > 多元社群	監管合作夥伴關係 > 出席/主持與政策制定者/監管機構的會議	10,000	International	Rarely	119026771169
I personally have testified before the FDA [Food and Drug Administration] and CMS [Centers for Medicare & Medicaid Services].	移植 > 移植：心臟及肺部	監管合作夥伴關係 > 出席/主持與政策制定者/監管機構的會議	1,000	Regional	Sometimes	119037216727
We collaborated on an externally-led Patient-Focused Drug Development meeting with the FDA [Food and Drug Administration] in 2025.	神經系統 > 多發性硬化症	監管合作夥伴關係 > 出席/主持與政策制定者/監管機構的會議	100,000	National	Rarely	119039458452
Meeting with people at CMS [Centers for Medicare & Medicaid Services] to weigh in on drug pricing negotiation potential consequences.	罕見 > 罕見疾病：大多數類型	監管合作夥伴關係 > 出席/主持與政策制定者/監管機構的會議	5,000	National	Sometimes	119046591776
Elevating the patient voice and sharing insights from our patient experience registry at meetings such as ODAC [Oncologic Drugs Advisory Committee] and MDPNP [Medical Device Patient Network Program] listening sessions.	癌症 > 癌症：其他	監管合作夥伴關係 > 出席/主持與政策制定者/監管機構的會議	100,000	International	Regularly	119047535935
Communications with FDA [Food and Drug Administration], participating in public comment sessions.	血液 > 貧血	監管合作夥伴關係 > 出席/主持與政策制定者/監管機構的會議	5,000	National	Regularly	119050770645
We work with FDA [Food and Drug Administration], Congress, and the White House on federal policies that affect liver patients.	肝臟 > 肝臟疾病：大多數類型	監管合作夥伴關係 > 出席/主持與政策制定者/監管機構的會議	100,000	International	Regularly	119054948119
Testifying at ODAC [Oncologic Drugs Advisory Committee].	癌症 > 癌症：其他	監管合作夥伴關係 > 出席/主持與政策制定者/監管機構的會議	100,000	International	Sometimes	119059387919
Just recently hosted an EL-PFDD [Externally-Led Patient-Focused Drug Development] meeting and attended FDA [Food and Drug Administration] meetings with industry partners.	罕見 > 罕見疾病：遺傳性	監管合作夥伴關係 > 出席/主持與政策制定者/監管機構的會議	5,000	International	Regularly	119065526277
EL-PFDD [Externally-Led Patient-Focused Drug Development] FDA [Food and Drug Administration] Patient Listening Sessions.	患者倡議 > 健康活動人士	監管合作夥伴關係 > 出席/主持與政策制定者/監管機構的會議	10,000	National	Regularly	119066130575
We have testified at FDA [Food and Drug Administration] Adcomms [Advisory Committees] and have helped organise Patient-Focused Drug Development meetings.	神經肌肉 > 神經肌肉疾病：大多數類型	監管合作夥伴關係 > 出席/主持與政策制定者/監管機構的會議	100,000	National	Sometimes	119068005400
Actively participate in Patient Focused Drug Development with FDA [Food and Drug Administration].	風濕性 > 狼瘡	監管合作夥伴關係 > 出席/主持與政策制定者/監管機構的會議	100,000	National	Regularly	119070039917
We have held multiple externally led patient-focused drug development (EL-PFDD [Externally Led Patient-Focused Drug Development]) meetings with the FDA [Food and Drug Administration]. We invite regulators to all our scientific workshops. We educate patients and facilitate meetings with regulators on an ongoing basis.	腎臟 > 腎臟疾病	監管合作夥伴關係 > 出席/主持與政策制定者/監管機構的會議	100,000	National	Regularly	119070696943
We provide public comment on new drugs to the FDA [Food and Drug Administration].	血液 > 鐮狀細胞病	監管合作夥伴關係 > 出席/主持與政策制定者/監管機構的會議	10,000	Regional	Sometimes	119074242460
Participation in activities like PDUFA [Prescription Drug User Fee Act] and MDUFA [Medical Device User Fee and Modernization Act] discussions.	罕見 > 罕見疾病：大多數類型	監管合作夥伴關係 > 出席/主持與政策制定者/監管機構的會議	100,000	National	Rarely	119078556821
Coalition work.	罕見 > 罕見病：患者權利	監管合作夥伴關係 > 與其他醫療倡導者	100,000	National	Sometimes	119050874740
We lead the national coalition EACH [Ensuring Access through Collaborative Health]/PIC [Patient Inclusion Council] coalition, working on government drug affordability reviews.	自身免疫 > 自身免疫：其他	監管合作夥伴關係 > 與其他醫療倡導者	100,000	International	Regularly	119071535440
In Arizona and, on occasion, more broadly across the USA, we collaborate with other cancer groups, organisations, and legislators.	癌症 > 癌症：血液	監管合作夥伴關係 > 與其他醫療倡導者	Do not know	Regional	Sometimes	119078394447
Lobbying on the state and federal level on rules/laws that impact our patients.	一般健康 > 醫療服務提供	影響政策及立法 > 影響醫療保健政策及立法	100	National	Sometimes	119011450240
Our Cancer Policy Institute advocates for equitable access to medicines to government organizations such as CMS [Centers for Medicare & Medicaid Services].	癌症 > 癌症：其他	影響政策及立法 > 影響醫療保健政策及立法	100,000	International	Regularly	119020437168
We include a discussion of medication pricing in our conversations with the state and federal government employees. We are also pushing for lifetime coverage of physical therapy for people with PD [Parkinson's Disease], as maintaining balance as the disease progresses saves both providers and insurers money in the long run.	神經退行性 > 柏金遜症	影響政策及立法 > 影響醫療保健政策及立法	100,000	Regional	Rarely	119020536956
Advocacy with PBM [Pharmacy Benefit Manager], Medicare and state legislatures.	風濕性 > 狼瘡	影響政策及立法 > 影響醫療保健政策及立法	5,000	Regional	Sometimes	119037794627
Advocacy with PBM [Pharmacy Benefit Manager], Medicare and state legislatures.	風濕性 > 狼瘡	影響政策及立法 > 影響醫療保健政策及立法	5,000	Regional	Sometimes	119037794627
...The organization's flagship event - the annual Indo US Bridging RARE Summit brings together rare disease stakeholders, including scientists, patient advocates, government officials, biopharma executives, and policy experts who share a common goal: transforming the future of care for the 400 million people worldwide living with rare diseases.	罕見 > 罕見疾病：大多數類型	影響政策及立法 > 影響醫療保健政策及立法	100	International	Regularly	119038170136
Invitation to the White House in 2024 to discuss cancer research funding with the First Lady's office.	癌症 > 癌症：醫學研究	影響政策及立法 > 影響醫療保健政策及立法	1,000	National	Rarely	119044810653
We work with FDA [Food and Drug Administration], Congress, and the White House on federal policies that affect liver patients.	肝臟 > 肝臟疾病：大多數類型	影響政策及立法 > 影響醫療保健政策及立法	100,000	International	Regularly	119054948119
We frequently engage on state and federal issues related to patient access to care.	呼吸系統 > 肺部疾病	影響政策及立法 > 影響醫療保健政策及立法	100,000	National	Rarely	119055217525
We regularly advocate through sign-on letters, policymaker discussions, and policy related programming.	癌症 > 癌症：多元社群	影響政策及立法 > 影響醫療保健政策及立法	5,000	National	Sometimes	119055664199
We both authored and signed on to letters to state and federal (private insurance and CMS [Centers for Medicare & Medicaid Services]) on a variety of issues.	心血管 > 心血管及心臟疾病	影響政策及立法 > 影響醫療保健政策及立法	Over 100,000	International	Sometimes	119058234393
Campaigning with KidneyCAN for increased federal research funding.	癌症 > 癌症：腎臟	影響政策及立法 > 影響醫療保健政策及立法	1,000	Regional	Sometimes	119059282158
The Community Liver Alliance represents patient interests to regulators and policymakers responsible for advising on and determining drug pricing. We engage at the federal and state levels to ensure that the lived experiences of people affected by liver disease inform policy decisions related to drug access, affordability, and reimbursement. Our advocacy includes engagement with CMS [Centers for Medicare & Medicaid Services], participation in public comment opportunities (including those related to Medicare Drug Price Negotiation), collaboration with policymakers on PBM [Pharmacy Benefit Manager] reform, and education of regulatory stakeholders about the real-world impact of pricing decisions on patients with chronic and rare liver diseases. We elevate patient and caregiver voices to ensure pricing policies balance innovation with equitable and timely access to life-saving therapies.	肝臟 > 肝臟疾病：大多數類型	影響政策及立法 > 影響醫療保健政策及立法	100,000	National	Regularly	119059491202
We communicate with federal representatives about the importance of funding.	癌症 > 癌症：腦部	影響政策及立法 > 影響醫療保健政策及立法	We do not communicate with patients directly	National	Sometimes	119061001133
We bring patient perspectives opposing use of QALYs [Quality-Adjusted Life Years].	患者倡議 > 健康活動人士	影響政策及立法 > 影響醫療保健政策及立法	Do not know	National	Regularly	119065430409
Just one example: we continually advocate (both through regulatory comments and now legislation) for adequate reimbursement for new and innovative drugs in the ESRD [End-Stage Renal Disease] space through TDAPA [Transitional Drug Add-on Payment Adjustment] and a sustainable post-TDAPA payment pathway.	腎臟 > 腎臟疾病	影響政策及立法 > 影響醫療保健政策及立法	Over 100,000	National	Regularly	119068073151
We work with state, federal policymakers and health insurers.	一般健康 > 肥胖症	影響政策及立法 > 影響醫療保健政策及立法	Over 100,000	National	Sometimes	119068989651
As a transgender-led healthcare organization, ETSI [Ending Transmission of Sexual Infections] also brings the perspective of historically marginalized communities into healthcare discussions. The clinic advocates for policies that protect medication affordability, expand HIV prevention services, and strengthen programs that reduce the cost of prescription drugs for safety-net providers. Through patient care, community engagement, and participation in public health programs, ETSI Health Clinic ensures that the voices and needs of vulnerable patients are represented in conversations about medication access and healthcare equity.	HIV > HIV及性健康	影響政策及立法 > 影響醫療保健政策及立法	100	Regional	Regularly	119073874628
Supported efforts to have an ICD-10 (International Classification of Diseases, 10th Revision) code for VEXAS syndrome.	罕見 > 自體發炎性疾病	影響政策及立法 > 影響醫療保健政策及立法	1,000	International	Sometimes	119074154009
We provide public comment on new drugs to the FDA. We regularly organize delegations to Capitol Hill to advocate for Medicaid and Medicare support for sickle cell treatment. We advocate with New Jersey legislators for support for sickle cell treatment and services.	血液 > 鐮狀細胞病	影響政策及立法 > 影響醫療保健政策及立法	10,000	Regional	Sometimes	119074242460
Testifying at PDAB meetings [submitting comments to a Patient Drug Affordability Board during a public meeting, hearing, or review process] writing letters to decision-makers at state and federal level [USA].	罕見 > 囊性纖維化	影響政策及立法 > 影響醫療保健政策及立法	10,000	National	Sometimes	119078388026
In Arizona and occasionally, the U.S., we collaborate with other cancer groups, organizations, and legislators who support legislation that will help cancer research, the medical/oncology groups, and cancer patients and families.	癌症 > 癌症：血液	影響政策及立法 > 影響醫療保健政策及立法	Do not know	Regional	Sometimes	119078394447
We have a policy committee and weigh in on public policy issues through education and advocacy.	慢性 > 緩和治療	影響政策及立法 > 影響醫療保健政策及立法	100	National	Regularly	119078649119
We include a discussion of medication pricing in our discussions with state and federal government employees.	神經退行性 > 柏金遜症	影響政策及立法 > 參與公眾聆訊及諮詢	100,000	Regional	Rarely	119020536956
We submitted comments to CMS [Centers for Medicare & Medicaid Services] regarding the price negotiation of mental health and neurological conditions.	心理健康 > 心理健康：污名化	影響政策及立法 > 參與公眾聆訊及諮詢	We do not communicate with patients directly	National	Sometimes	119024698241
IndoUSrare participates in RDLA's [Rare Disease Legislative Advocates] Rare Disease Week on Capitol Hill and advocates to legislators on behalf of our patient alliance members and the rare disease community.	罕見 > 罕見疾病：大多數類型	影響政策及立法 > 參與公眾聆訊及諮詢	100	International	Regularly	119038170136
Testify before prescription drug affordability boards.	出血 > 出血性疾病：大多數類型	影響政策及立法 > 參與公眾聆訊及諮詢	1,000	Local	Regularly	119044404340
Communications with FDA [Food and Drug Administration], participating in public comment sessions.	血液 > 貧血	影響政策及立法 > 參與公眾聆訊及諮詢	5,000	National	Regularly	119050770645
We regularly advocate through sign-on letters, policymaker discussions, and policy related programming.	癌症 > 癌症：多元社群	影響政策及立法 > 參與公眾聆訊及諮詢	5,000	National	Sometimes	119055664199
We both authored and signed on to letters to state and federal (private insurance and CMS [Centers for Medicare & Medicaid Services]) on a variety of issues.	心血管 > 心血管及心臟疾病	影響政策及立法 > 參與公眾聆訊及諮詢	Over 100,000	International	Sometimes	119058234393
... Testifying at IRA [Inflation Reduction Act] listening sessions to elevate the patient experience.	癌症 > 癌症：其他	影響政策及立法 > 參與公眾聆訊及諮詢	100,000	International	Sometimes	119059387919
The Community Liver Alliance engages at the federal and state levels to ensure that the lived experiences of people affected by liver disease inform policy decisions related to drug access, affordability, and reimbursement. The Community Liver Alliance's advocacy includes engagement with CMS [Centers for Medicare & Medicaid Services], participation in public comment opportunities (including those related to Medicare Drug Price Negotiation), collaboration with policymakers on PBM [Pharmacy Benefit Manager] reform, and education of regulatory stakeholders about the real-world impact of pricing decisions on patients with chronic and rare liver diseases.	肝臟 > 肝臟疾病：大多數類型	影響政策及立法 > 參與公眾聆訊及諮詢	100,000	National	Regularly	119059491202
Through written comments, sign-on letters, and participating in roundtable meetings where drugs are being discussed.	癌症 > 癌症：肉瘤	影響政策及立法 > 參與公眾聆訊及諮詢	10,000	International	Sometimes	119064713792
We work with the state agencies that oversee our Medicaid program, our exchange and private insurance. We hold quarterly meetings with them to discuss patient access issues. We also provide letters and testimony to the board that oversees health care costs in our state.	出血 > 出血性疾病：大多數類型	影響政策及立法 > 參與公眾聆訊及諮詢	5,000	Regional	Regularly	119069774462
... Our government relations team responds to comment letters and regularly talks with CMS [Centers for Medicare & Medicaid Services] to ensure best outcomes.	腎臟 > 腎臟疾病	影響政策及立法 > 參與公眾聆訊及諮詢	100,000	National	Regularly	119070696943
We provided comments to federal and state regulators around drug pricing in the 340B program [in the US, these reforms seek to overhaul the 1992 federal program that mandates pharmaceutical manufacturers provide steep drug discounts to safety-net hospitals and clinics] when asking for community input to proposed policy changes.	病人教育 > 患者資料	影響政策及立法 > 參與公眾聆訊及諮詢	5,000	National	Sometimes	119073380443
We are not a lobbying organization, we are a 501 c-3 non-profit public charity. We sign on to letters with partner societies who are lobbying for better access to care. We host roundtables and advocacy awareness days with legislators where we raise awareness of current problems and offer solutions. One recent event was with the Governor of Virginia. We are planning a Spine Health Fair at the US Capitol in September.	一般健康 > 生活方式	影響政策及立法 > 參與公眾聆訊及諮詢	100,000	National	Sometimes	119074217249
We provide public comment on new drugs to the FDA [Food and Drug Administration].	血液 > 鐮狀細胞病	影響政策及立法 > 參與公眾聆訊及諮詢	10,000	Regional	Sometimes	119074242460
Work with NYSTAG [New York State Technical Advisory Group-generally refers to ad-hoc or specialised panels of industry experts, academics, and stakeholders assembled by NY state agencies to advise on specific policies, healthcare, or emerging technologies.].	一般健康 > 醫療服務提供	影響政策及立法 > 參與公眾聆訊及諮詢	5,000	Regional	Sometimes	119078326039
Testifying at PDAB meetings [submitting comments to a Patient Drug Affordability Board during a public meeting, hearing, or review process] writing letters to decision-makers at state and federal level [USA].	罕見 > 囊性纖維化	影響政策及立法 > 參與公眾聆訊及諮詢	10,000	National	Sometimes	119078388026
IndoUSrare participates in RDLA's [Rare Disease Legislative Advocates] Rare Disease Week on Capitol Hill and advocates to legislators on behalf of our patient alliance members and the rare disease community.	罕見 > 罕見疾病：大多數類型	影響政策及立法 > 動員議員及政治領袖	100	International	Regularly	119038170136
Invitation to the White House in 2024 to discuss cancer research funding with the First Lady's office.	癌症 > 癌症：醫學研究	影響政策及立法 > 動員議員及政治領袖	1,000	National	Rarely	119044810653
We communicate with federal representatives about the importance of funding.	癌症 > 癌症：腦部	影響政策及立法 > 動員議員及政治領袖	We do not communicate with patients directly	National	Sometimes	119061001133
We provide public comment on new drugs to the FDA. We regularly organize delegations to Capitol Hill to advocate for Medicaid and Medicare support for sickle cell treatment. We advocate with New Jersey legislators for support for sickle cell treatment and services.	血液 > 鐮狀細胞病	影響政策及立法 > 動員議員及政治領袖	10,000	Regional	Sometimes	119074242460
... We are active in Lupus Caucus [Congressional Lupus Caucus, a bipartisan group of lawmakers focused on raising awareness about lupus and securing federal funding for research and education]	風濕性 > 狼瘡	影響政策及立法 > 動員議員及政治領袖	100,000	National	Regularly	119082751826
Government Relations/Advocacy team signs letters in support of lower drug prices.	癌症 > 癌症：前列腺	定價及可負擔性倡議 > 倡導公平藥品定價	100,000	National	Sometimes	119011723588
We include a discussion of medication pricing in our discussions with state and federal government employees.	神經退行性 > 柏金遜症	定價及可負擔性倡議 > 倡導公平藥品定價	100,000	Regional	Rarely	119020536956
Testify before prescription drug affordability boards.	出血 > 出血性疾病：大多數類型	定價及可負擔性倡議 > 倡導公平藥品定價	1,000	Local	Regularly	119044404340
Drug assistance programs and co-pay assistance foundation.	癌症 > 癌症：大多數類型	定價及可負擔性倡議 > 倡導公平藥品定價	5,000	International	Sometimes	119045428228
We frequently engage on state and federal issues related to patient access to care, occasionally weighing in on issues adjacent to drug pricing, though it is not our primary focus.	呼吸系統 > 肺部疾病	定價及可負擔性倡議 > 倡導公平藥品定價	100,000	National	Rarely	119055217525
The Community Liver Alliance represents patient interests to regulators and policymakers responsible for advising on and determining drug pricing. We engage at the federal and state levels to ensure that the lived experiences of people affected by liver disease inform policy decisions related to drug access, affordability, and reimbursement. Our advocacy includes engagement with CMS [Centers for Medicare & Medicaid Services], participation in public comment opportunities (including those related to Medicare Drug Price Negotiation), collaboration with policymakers on PBM [Pharmacy Benefit Manager] reform, and education of regulatory stakeholders about the real-world impact of pricing decisions on patients with chronic and rare liver diseases. We elevate patient and caregiver voices to ensure pricing policies balance innovation with equitable and timely access to life-saving therapies	肝臟 > 肝臟疾病：大多數類型	定價及可負擔性倡議 > 倡導公平藥品定價	100,000	National	Regularly	119059491202
Promoting 340B reforms [in the US, these reforms seek to overhaul the 1992 federal program that mandates pharmaceutical manufacturers provide steep drug discounts to safety-net hospitals and clinics].	患者倡議 > 健康活動人士	定價及可負擔性倡議 > 倡導公平藥品定價	10,000	Regional	Regularly	119059636045
Have written support letters from the "patient voice" as part of our advocacy efforts related to drug pricing.	癌症 > 癌症：腦部	定價及可負擔性倡議 > 倡導公平藥品定價	1,000	National	Rarely	119061176158
Our organisation actively advocates for the interests of the individuals and communities we serve before regulatory authorities and decision-making bodies on matters relating to medicine access, affordability, and coverage recommendations.	患者倡議 > 訓練	定價及可負擔性倡議 > 倡導公平藥品定價	100,000	International	Regularly	119063146174
We bring patient perspectives opposing use of QUALYs [quality-adjusted life years] and opposing importing drug prices from other countries [oustide of the USA], especially those that use QALYs.	患者倡議 > 健康活動人士	定價及可負擔性倡議 > 倡導公平藥品定價	Do not know	National	Regularly	119065430409
Just one example: we continually advocate (both through regulatory comments and now legislation) for adequate reimbursement for new and innovative drugs in the ESRD [End-Stage Renal Disease] space through TDAPA [Transitional Drug Add-on Payment Adjustment] and a sustainable post-TDAPA payment pathway.	腎臟 > 腎臟疾病	定價及可負擔性倡議 > 倡導公平藥品定價	Over 100,000	National	Regularly	119068073151
We work with the state agencies that oversee our Medicaid program, our exchange and private insurance. We hold quarterly meetings with them to discuss patient access issues. We also provide letters and testimony to the board that oversees health care costs in our state.	出血 > 出血性疾病：大多數類型	定價及可負擔性倡議 > 倡導公平藥品定價	5,000	Regional	Regularly	119069774462
ETSI [Ending Transmission of Sexual Infections] Health Clinic represents the interests of patients—particularly those impacted by HIV, LGBTQ+ individuals, and underserved communities—by advocating for affordable access to life-saving medications.	HIV > HIV及性健康	定價及可負擔性倡議 > 倡導公平藥品定價	100	Regional	Regularly	119073874628
Pharma pricing.	一般健康 > 肥胖症	定價及可負擔性倡議 > 倡導公平藥品定價	100,000	National	Regularly	119076659022
With our new Public Policy department, this may come up as an opportunity to advocate for drug pricing.	神經退行性 > 柏金遜症	定價及可負擔性倡議 > 倡導公平藥品定價	100,000	National	Sometimes	119078318937
Cost for SCD [Sickle Cell Disease] treatments as they came to market during the last 7 years.	血液 > 鐮狀細胞病	定價及可負擔性倡議 > 倡導公平藥品定價	5,000	National	Sometimes	119079213376
We have participated in the IRA [Inflation Reduction Act] price negotiation round tables.	呼吸系統 > 哮喘及過敏症	定價及可負擔性倡議 > 參與價格審查委員會談判	100,000	National	Regularly	119011501209
We have participated in the IRA [Inflation Reduction Act of 2022] price negotiation round tables [The IRA provides Medicare (the US federal health insurance program for people age 65 and older) powers to negotiate lower prescription costs].	呼吸系統 > 哮喘及過敏症	定價及可負擔性倡議 > 參與價格審查委員會談判	100,000	National	Regularly	119011501209
We submitted comments to CMS [Centers for Medicare & Medicaid Services] regarding the price negotiation of mental health and neurological conditions.	心理健康 > 心理健康：污名化	定價及可負擔性倡議 > 參與價格審查委員會談判	We do not communicate with patients directly	National	Sometimes	119024698241
... meetings with state office of CMS [Centers for Medicare & Medicaid Services].	出血 > 出血性疾病：大多數類型	定價及可負擔性倡議 > 參與價格審查委員會談判	1,000	Local	Regularly	119044404340
Meeting with people at CMS [Centers for Medicare & Medicaid Services] to weigh in on drug pricing negotiation potential consequences.	罕見 > 罕見疾病：大多數類型	定價及可負擔性倡議 > 參與價格審查委員會談判	5,000	National	Sometimes	119046591776
We educate advocates on outreach to Patient Drug Affordability Boards [Patient Drug Affordability Boards are state government boards that review prescription drug prices and, in some US states, can take actions to help make drugs more affordable.]	癌症 > 癌症：多元社群	定價及可負擔性倡議 > 參與價格審查委員會談判	100,000	National	Sometimes	119054172981
The Community Liver Alliance's advocacy includes engagement with CMS [Centers for Medicare & Medicaid Services], participation in public comment opportunities (including those related to Medicare Drug Price Negotiation), collaboration with policymakers on PBM [Pharmacy Benefit Manager] reform, and education of regulatory stakeholders about the real-world impact of pricing decisions on patients with chronic and rare liver diseases.	肝臟 > 肝臟疾病：大多數類型	定價及可負擔性倡議 > 參與價格審查委員會談判	100,000	National	Regularly	119059491202
PDABs [Prescription Drug Affordability Boards]; IRA [Inflation Reduction Act]; Medicaid P&T [Pharmacy and Therapeutics] committees.	患者倡議 > 健康活動人士	定價及可負擔性倡議 > 參與價格審查委員會談判	We do not communicate with patients directly	National	Regularly	119064160791
We participated in the Medicare price negotiation roundtables and town hall last year.	呼吸系統 > 哮喘及過敏症	定價及可負擔性倡議 > 參與價格審查委員會談判	100,000	National	Regularly	119069847466
Actively participate in patient-focused drug development with the FDA [Food and Drug Administration] and CMS [Centers for Medicare & Medicaid Services]/HHS [U.S. Department of Health and Human Services] Prescription Access discussions.	風濕性 > 狼瘡	定價及可負擔性倡議 > 參與價格審查委員會談判	100,000	National	Regularly	119070039917
We lead the national coalition EACH [Ensuring Access through Collaborative Health]/PIC [Patient Inclusion Council] coalition, working on government drug affordability reviews.	自身免疫 > 自身免疫：其他	定價及可負擔性倡議 > 參與價格審查委員會談判	100,000	International	Regularly	119071535440
We provided comments to federal and state regulators around drug pricing in the 340B program [in the US, these reforms seek to overhaul the 1992 federal program that mandates pharmaceutical manufacturers provide steep drug discounts to safety-net hospitals and clinics] when asking for community input to proposed policy changes.	病人教育 > 患者資料	定價及可負擔性倡議 > 參與價格審查委員會談判	5,000	National	Sometimes	119073380443
We communicate to them that many HD [Huntington's disease] families are low income as often the one making the money is the one with HD. So cost of meds can impact whether they can afford the meds.	神經退行性 > 亨廷頓舞蹈症	定價及可負擔性倡議 > 解決低收入及弱勢群體的費用負擔問題	100,000	National	Sometimes	119017688949
Health insurance companies and health insurance reps organize activities for low income communities.	年長人士 > 年長人士	定價及可負擔性倡議 > 解決低收入及弱勢群體的費用負擔問題	Over 100,000	International	Sometimes	119035935608
ETSI [Ending Transmission of Sexual Infections] Health Clinic represents the interests of patients—particularly those impacted by HIV, LGBTQ+ individuals, and underserved communities—by advocating for affordable access to life-saving medications and healthcare services. Through its participation in programs such as the 340B Drug Pricing Program [in the US, these reforms seek to overhaul the 1992 federal program that mandates pharmaceutical manufacturers provide steep drug discounts to safety-net hospitals and clinics], ETSI works to ensure that low-income and uninsured patients have access to reduced-cost prescription medications, including HIV treatment and prevention medications like PrEP.	HIV > HIV及性健康	定價及可負擔性倡議 > 解決低收入及弱勢群體的費用負擔問題	100	Regional	Regularly	119073874628
We regularly provide comments to state P&T [Pharmacy and Therapeutics] committees regarding their formulary inclusions and exclusions.	呼吸系統 > 哮喘及過敏症	定價及可負擔性倡議 > 倡導將產品納入報銷清單／國家藥品目錄	100,000	National	Regularly	119011501209
PDABs [Prescription Drug Affordability Boards]; IRA [Inflation Reduction Act]; Medicaid P&T [Pharmacy and Therapeutics] committees.	患者倡議 > 健康活動人士	定價及可負擔性倡議 > 倡導將產品納入報銷清單／國家藥品目錄	We do not communicate with patients directly	National	Regularly	119064160791
Invitation to the White House in 2024 to discuss cancer research funding with First Lady's office. Lastly, I've co-written op-eds and on the local level recorded a video (ACS) targeting NYS lawmakers and the advocacy for increased equity and access to biomarker testing for patients.	癌症 > 癌症：醫學研究	定價及可負擔性倡議 > 參與宣傳活動	1,000	National	Rarely	119044810653
Advocacy in access to care issues.	癌症 > 癌症：大多數類型	改善存取途徑 > 促進公平獲取藥物／醫療保健	10,000	Regional	Sometimes	119011457943
Our Cancer Policy Institute advocates for equitable access to medicines to government organizations such as CMS [Centers for Medicare & Medicaid Services].	癌症 > 癌症：其他	改善存取途徑 > 促進公平獲取藥物／醫療保健	100,000	International	Regularly	119020437168
We include a discussion of medication pricing in our conversations with the state and federal government employees. We are also pushing for lifetime coverage of physical therapy for people with PD [Parkinson's Disease], as maintaining balance as the disease progresses saves both providers and insurers money in the long run.	神經退行性 > 柏金遜症	改善存取途徑 > 促進公平獲取藥物／醫療保健	100,000	Regional	Rarely	119020536956
... We sent letters to States to request that they change their step requirements for access to mental health treatments.	心理健康 > 心理健康：污名化	改善存取途徑 > 促進公平獲取藥物／醫療保健	We do not communicate with patients directly	National	Sometimes	119024698241
Invitation to the White House in 2024 to discuss cancer research funding with First Lady's office. Lastly, I've co-written op-eds and on the local level recorded a video (ACS) targeting NYS lawmakers and the advocacy for increased equity and access to biomarker testing for patients.	癌症 > 癌症：醫學研究	改善存取途徑 > 促進公平獲取藥物／醫療保健	1,000	National	Rarely	119044810653
Drug assistance programs and co-pay assistance foundation.	癌症 > 癌症：大多數類型	改善存取途徑 > 促進公平獲取藥物／醫療保健	5,000	International	Sometimes	119045428228
We frequently engage on state and federal issues related to patient access to care.	呼吸系統 > 肺部疾病	改善存取途徑 > 促進公平獲取藥物／醫療保健	100,000	National	Rarely	119055217525
The Community Liver Alliance elevates patient and caregiver voices to ensure pricing policies balance innovation with equitable and timely access to life-saving therapies.	肝臟 > 肝臟疾病：大多數類型	改善存取途徑 > 促進公平獲取藥物／醫療保健	100,000	National	Regularly	119059491202
We might provide patient stories and testimonials when needed to ensure importance of continued access to a particular drug.	神經系統 > 偏頭痛／其他頭痛疾患	改善存取途徑 > 促進公平獲取藥物／醫療保健	100,000	National	Rarely	119060019780
Our organisation actively advocates for the interests of the individuals and communities we serve before regulatory authorities and decision-making bodies on matters relating to medicine access, affordability, and coverage recommendations.	患者倡議 > 訓練	改善存取途徑 > 促進公平獲取藥物／醫療保健	100,000	International	Regularly	119063146174
State level Medicaid.	癌症 > 癌症：大多數類型	改善存取途徑 > 促進公平獲取藥物／醫療保健	1,000	National	Rarely	119068136322
We work with the state agencies that oversee our Medicaid program, our exchange and private insurance. We hold quarterly meetings with them to discuss patient access issues. We also provide letters and testimony to the board that oversees health care costs in our state.	出血 > 出血性疾病：大多數類型	改善存取途徑 > 促進公平獲取藥物／醫療保健	5,000	Regional	Regularly	119069774462
We are currently addressing access to biologic medications.	罕見 > 罕見疾病：免疫	改善存取途徑 > 促進公平獲取藥物／醫療保健	10,000	National	Sometimes	119069849386
Actively participate in patient-focused drug development with the FDA [Food and Drug Administration] and CMS [Centers for Medicare & Medicaid Services]/HHS [U.S. Department of Health and Human Services] Prescription Access discussions.	風濕性 > 狼瘡	改善存取途徑 > 促進公平獲取藥物／醫療保健	100,000	National	Regularly	119070039917
We are not a lobbying organization, we are a 501 c-3 non-profit public charity. We sign on to letters with partner societies who are lobbying for better access to care. Support with formal cost-approval (reimbursement authorisation) applications and with newly introduced restrictions on treatment options.	一般健康 > 生活方式	改善存取途徑 > 促進公平獲取藥物／醫療保健	100,000	National	Sometimes	119074217249
Pharma pricing, coverage, indications.	一般健康 > 肥胖症	改善存取途徑 > 促進公平獲取藥物／醫療保健	100,000	National	Regularly	119076659022
We have on only a few occasions advocated for better access to newer drugs.	心理健康 > 心理健康：污名化	改善存取途徑 > 促進公平獲取藥物／醫療保健	Over 100,000	International	Rarely	119078209025
Cost for SCD [Sickle Cell Disease] treatments as they came to market during the last 7 years.	血液 > 鐮狀細胞病	改善存取途徑 > 促進公平獲取藥物／醫療保健	5,000	National	Sometimes	119079213376
... convene MAPRx [Medicare Access for Patients Rx] for Medicare Part D, etc.[MAPRx is guided by the idea that every Medicare Part D beneficiary should have timely, affordable access to the medications they need to live a healthy life.]	風濕性 > 狼瘡	改善存取途徑 > 促進公平獲取藥物／醫療保健	100,000	National	Regularly	119082751826
... We sent letters to States to request that they change their step requirements for access to mental health treatments.	心理健康 > 心理健康：污名化	改善存取途徑 > 解決在獲取和管理方面的差距	We do not communicate with patients directly	National	Sometimes	119024698241
We work with the state agencies that oversee our Medicaid program, our exchange and private insurance. We hold quarterly meetings with them to discuss patient access issues. We also provide letters and testimony to the board that oversees health care costs in our state.	出血 > 出血性疾病：大多數類型	改善存取途徑 > 解決在獲取和管理方面的差距	5,000	Regional	Regularly	119069774462
IndoUSrare participates in RDLA's [Rare Disease Legislative Advocates] Rare Disease Week on Capitol Hill and advocates to legislators on behalf of our patient alliance members and the rare disease community.	罕見 > 罕見疾病：大多數類型	改善存取途徑 > 改善罕見/極罕見療法的獲取途徑	100	International	Regularly	119038170136
Elevating the patient voice and sharing insights from our patient experience registry at meetings such as ODAC [Oncologic Drugs Advisory Committee] and MDPNP [Medical Device Patient Network Program] listening sessions.	癌症 > 癌症：其他	以實證為基礎的患者意見 > 利用患者洞察來輔助決策	100,000	International	Regularly	119047535935
Elevating the patient voice and sharing insights from our patient experience registry at meetings such as ODAC [Oncologic Drugs Advisory Committee] and MDPNP [Medical Device Patient Network Program] listening sessions.	癌症 > 癌症：其他	以實證為基礎的患者意見 > 利用患者洞察來輔助決策	100,000	International	Regularly	119047535935
Held an EL-PFDD [Externally-Led Patient-Focused Drug Development] meeting.	神經退行性 > 認知症	以實證為基礎的患者意見 > 利用患者洞察來輔助決策	Do not know	National	Sometimes	119052219350
Serve on the Alliance for Breast Cancer Policy [The Alliance for Breast Cancer Policy is a coalition of over 25 national patient advocacy organizations founded by Susan G. Komen. The network unites advocates, community members, and industry partners to drive federal policy changes that improve access to care, eliminate out-of-pocket costs, and improve outcomes]. We were just part of a manuscript written for the launch of the global Breast Cancer Care Quality Index: https://www.mdpi.com/1660-4601/23/2/207	癌症 > 癌症：乳腺癌	以實證為基礎的患者意見 > 利用患者洞察來輔助決策	100,000	International	Sometimes	119052475951
We bring patient perspectives opposing use of QALYs [Quality-Adjusted Life Years].	患者倡議 > 健康活動人士	以實證為基礎的患者意見 > 利用患者洞察來輔助決策	Do not know	National	Regularly	119065430409
Actively participate in Patient Focused Drug Development with FDA [Food and Drug Administration].	風濕性 > 狼瘡	以實證為基礎的患者意見 > 利用患者洞察來輔助決策	100,000	National	Regularly	119070039917
We have held multiple externally led patient-focused drug development (EL-PFDD [Externally Led Patient-Focused Drug Development]) meetings with the FDA [Food and Drug Administration].	腎臟 > 腎臟疾病	以實證為基礎的患者意見 > 利用患者洞察來輔助決策	100,000	National	Regularly	119070696943
As a transgender-led healthcare organization, ETSI [Ending Transmission of Sexual Infections] also brings the perspective of historically marginalized communities into healthcare discussions. The clinic advocates for policies that protect medication affordability, expand HIV prevention services, and strengthen programs that reduce the cost of prescription drugs for safety-net providers. Through patient care, community engagement, and participation in public health programs, ETSI Health Clinic ensures that the voices and needs of vulnerable patients are represented in conversations about medication access and healthcare equity.	HIV > HIV及性健康	以實證為基礎的患者意見 > 利用患者洞察來輔助決策	100	Regional	Regularly	119073874628
We provide data and real-world knowledge.	肝臟 > 肝臟疾病：大多數類型	以實證為基礎的患者意見 > 向監管機構提供真實世界證據（RWE）	100,000	National	Sometimes	119045306046
The Community Liver Alliance represents patient interests to regulators and policymakers responsible for advising on and determining drug pricing. We engage at the federal and state levels to ensure that the lived experiences of people affected by liver disease inform policy decisions related to drug access, affordability, and reimbursement. Our advocacy includes engagement with CMS [Centers for Medicare & Medicaid Services], participation in public comment opportunities (including those related to Medicare Drug Price Negotiation), collaboration with policymakers on PBM [Pharmacy Benefit Manager] reform, and education of regulatory stakeholders about the real-world impact of pricing decisions on patients with chronic and rare liver diseases. We elevate patient and caregiver voices to ensure pricing policies balance innovation with equitable and timely access to life-saving therapies	肝臟 > 肝臟疾病：大多數類型	以實證為基礎的患者意見 > 向監管機構提供真實世界證據（RWE）	100,000	National	Regularly	119059491202
ETSI [Ending Transmission of Sexual Infections] Health Clinic collaborates with pharmacy partners and public health systems to highlight the real-world impact that medication costs have on patients living with HIV and those at risk. By documenting patient barriers to medication access, the clinic helps inform healthcare partners and policymakers about the financial and systemic challenges patients face.	HIV > HIV及性健康	以實證為基礎的患者意見 > 向監管機構提供真實世界證據（RWE）	100	Regional	Regularly	119073874628
We communicate to them that many HD [Huntington's Disease] families are low income, as often the one making the money is the one with HD.	神經退行性 > 亨廷頓舞蹈症	以實證為基礎的患者意見 > 善用患者故事及親身經歷敘述	100,000	National	Sometimes	119017688949
The Community Liver Alliance engages at the federal and state levels to ensure that the lived experiences of people affected by liver disease inform policy decisions related to drug access, affordability, and reimbursement. We elevate patient and caregiver voices to ensure pricing policies balance innovation with equitable and timely access to life-saving therapies.	肝臟 > 肝臟疾病：大多數類型	以實證為基礎的患者意見 > 善用患者故事及親身經歷敘述	100,000	National	Regularly	119059491202
We might provide patient stories and testimonials when needed to ensure importance of continued access to a particular drug.	神經系統 > 偏頭痛／其他頭痛疾患	以實證為基礎的患者意見 > 善用患者故事及親身經歷敘述	100,000	National	Rarely	119060019780
Have written support letters from the "patient voice" as part of our advocacy efforts related to drug pricing.	癌症 > 癌症：腦部	以實證為基礎的患者意見 > 善用患者故事及親身經歷敘述	1,000	National	Rarely	119061176158
Held an EL-PFDD [Externally-Led Patient-Focused Drug Development] meeting.	神經退行性 > 認知症	以實證為基礎的患者意見 > 進行調查/研究以產生數據	Do not know	National	Sometimes	119052219350
Serve on the Alliance for Breast Cancer Policy [The Alliance for Breast Cancer Policy is a coalition of over 25 national patient advocacy organizations founded by Susan G. Komen. The network unites advocates, community members, and industry partners to drive federal policy changes that improve access to care, eliminate out-of-pocket costs, and improve outcomes]. We were just part of a manuscript written for the launch of the global Breast Cancer Care Quality Index: https://www.mdpi.com/1660-4601/23/2/207	癌症 > 癌症：乳腺癌	以實證為基礎的患者意見 > 進行調查/研究以產生數據	100,000	International	Sometimes	119052475951
As a transgender-led healthcare organization, ETSI [Ending Transmission of Sexual Infections] also brings the perspective of historically marginalized communities into healthcare discussions. The clinic advocates for policies that protect medication affordability, expand HIV prevention services, and strengthen programs that reduce the cost of prescription drugs for safety-net providers. Through patient care, community engagement, and participation in public health programs, ETSI Health Clinic ensures that the voices and needs of vulnerable patients are represented in conversations about medication access and healthcare equity.	HIV > HIV及性健康	以實證為基礎的患者意見 > 將證據與洞見轉化為政策建議	100	Regional	Regularly	119073874628
... We work closely with the FDA and other drug agencies, like EMA [European Medicines Agency] and PDMA [Pharmaceuticals and Medical Devices Agency], to look at endpoints for drug trials, or how to improve drug trials to benefit sponsors and patients.	腎臟 > 腎臟疾病	診斷及藥物送遞 > 協作設計臨床試驗	100,000	National	Regularly	119070696943
Supporting legislation for multiple cancer early detection, including TV appearances and social media.	癌症 > 癌症：照顧者、家人、朋友	診斷及藥物送遞 > 支援篩查及早期發現	1,000	Regional	Regularly	119036085844
Discussions about review and approvals of new screening technologies.	癌症 > 癌症：大多數類型	診斷及藥物送遞 > 支援篩查及早期發現	100,000	National	Rarely	119045117950
USPTF [U.S. Preventive Services Task Force] input.	癌症 > 癌症：男性	診斷及藥物送遞 > 支援篩查及早期發現	100,000	National	Sometimes	119050776275
Sit on several panels.	癌症 > 癌症：乳腺癌	機構管治 > 確保在政府諮詢機構中獲得代表席位	100	Regional	Regularly	119037236943
... The organization's flagship event - the annual Indo US Bridging RARE Summit brings together rare disease stakeholders, including scientists, patient advocates, government officials, biopharma executives, and policy experts who share a common goal: transforming the future of care for the 400 million people worldwide living with rare diseases.	罕見 > 罕見疾病：大多數類型	機構管治 > 在多方持份者網絡中有效運作	100	International	Regularly	119038170136
Serve on the Alliance for Breast Cancer Policy [The Alliance for Breast Cancer Policy is a coalition of over 25 national patient advocacy organizations founded by Susan G. Komen. The network unites advocates, community members, and industry partners to drive federal policy changes that improve access to care, eliminate out-of-pocket costs, and improve outcomes]. We were just part of a manuscript written for the launch of the global Breast Cancer Care Quality Index: https://www.mdpi.com/1660-4601/23/2/207	癌症 > 癌症：乳腺癌	機構管治 > 在多方持份者網絡中有效運作	100,000	International	Sometimes	119052475951
We are not a lobbying organization, we are a 501 c-3 non-profit public charity. We sign on to letters with partner societies who are lobbying for better access to care. We host roundtables and advocacy awareness days with legislators where we raise awareness of current problems and offer solutions. One recent event was with the Governor of Virginia. We are planning a Spine Health Fair at the US Capitol in September.	一般健康 > 生活方式	機構管治 > 在多方持份者網絡中有效運作	100,000	National	Sometimes	119074217249
We are typically advisors on ICER [Institute for Clinical and Economic Review] reviews, active in Lupus Caucus, convene MAPRx [Medicare Access for Patients Rx] for Medicare Part D, etc.[MAPRx is guided by the idea that every Medicare Part D beneficiary should have timely, affordable access to the medications they need to live a healthy life.]	風濕性 > 狼瘡	機構管治 > 在多方持份者網絡中有效運作	100,000	National	Regularly	119082751826

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