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Importance: People in the US face high out-of-pocket medical expenses, yielding financial strain and debt., Objective: To understand how households respond to medical bills they disagree with or cannot afford., Design, Setting, and Participants: A retrospective cohort study was carried out using a survey fielded between August 14 and October 14, 2023. The study included a random sample of adult (aged ≥18 years) survey respondents from the Understanding America Study (UAS). Participant responses were weighted to be nationally representative. The analysis took place from November 3, 2023, through January 8, 2024., Main Outcomes and Measures: Respondents reported if their household received a medical bill that they could not afford or did not agree with in the prior 12 months, and if anyone contacted the billing office regarding their concerns. Those who did reach out were asked about their experience and those who did not were asked why., Results: The survey was sent to 1233 UAS panelists, of which 1135 completed the survey, a 92.1% cooperation rate. Overall, 1 in 5 of the 1135 respondents received a medical bill that they disagreed with or could not afford. Leading bill sources were physician offices (66 [34.6%]), emergency room or urgent care (22 [19.9%]), and hospitals (31 [15.3%]), and 136 respondents (61.5%) contacted the billing office to address their concern. A more extroverted and less agreeable personality increased likelihood of reaching out. Respondents without a college degree, lower financial literacy, and the uninsured were less likely to contact a billing office. Among those who did not reach out, 55 (86.1%) reported that they did not think it would make a difference. Of those who reached out, 37 (25.7%) achieved bill corrections, better understanding (16 [18.2%]), payment plans (18 [15.5%]), price drop (17 [15.2%]), financial assistance (10 [8.1%]), and/or bill cancellation (6 [7.3%]), while 32 (21.8%) said that the issue was unresolved and 23.8% reported no change. These outcomes aligned well with respondents' billing concerns with financial relief for 75.8% of respondents reaching out about an unaffordable bill, bill corrections for 73.7% of those who thought there was mistake, and a price drop for 61.8% of those who negotiated., Conclusions and Relevance: This cross-sectional survey of a representative sample of patients in the US found that most respondents who self-advocated achieved bill corrections and payment relief. Differences in self-advocacy may be exacerbating socioeconomic inequalities in medical debt burden, as those with less education, lower financial literacy, and the uninsured were less likely to self-advocate. Policies that streamline the administrative burden or shift it from patients to the billing clinician may counter these disparities.

Competing Interests: Donna LudwinskiConsulting or Advisory Role: Y-mAbs TherapeuticsUncompensated Relationships: Lilly, Roche/GenentechNo other potential conflicts of interest were reported.

Background: Many patient organisations collaborate with drug companies, resulting in concerns about commercial agendas influencing patient advocacy. We contribute to an international body of knowledge on patient organisation-industry relations by considering payments reported in the industry's centralised 'collaboration database' in Sweden. We also investigate possible commercial motives behind the funding by assessing its association with drug commercialisation., Methods: Our primary data source were 1,337 payment reports from 2014-2018. After extraction and coding, we analysed the data descriptively, calculating the number, value and distribution of payments for various units of analysis, e.g. individual companies, diseases and payment goals. The association between drug commercialisation and patient organisation funding was assessed by, first, the concordance between leading companies marketing drugs in specific diseases and their funding of corresponding patient organisations and, second, the correlation between new drugs in broader condition areas and payments to corresponding patient organisations., Results: 46 companies reported paying €6,449.224 (median €2,411; IQR €1,024-4,569) to 77 patient organisations, but ten companies provided 67% of the funding. Small payments dominated, many of which covered costs of events organised by patient organisations. An association existed between drug commercialisation and industry funding. Companies supported patient organisations in diseases linked to their drug portfolios, with the top 3 condition areas in terms of funding-cancer; endocrine, nutritional and metabolic disorders; and infectious and parasitic disorders-accounting for 63% of new drugs and 56% of the funding., Conclusion: This study reveals close and widespread ties between patient organisations and drug companies. A relatively few number of companies dominated the funding landscape by supporting patient organisations in disease areas linked to their drug portfolios. This commercially motivated funding may contribute to inequalities in resource and influence between patient organisations. The association between drug commercialisation and industry funding is also worrying because of the therapeutic uncertainty of many new drugs. Our analysis benefited from the existence of a centralised database of payments-which should be adopted by other countries too-but databases should be downloadable in an analysable format to permit efficient and independent analysis., Competing Interests: The authors have declared that no competing interests exist.

The estimated 5.8 million Alzheimer's disease patients in the U.S. require an enormous share of national healthcare expenditures. Other nations face similar economic burdens. There have been great efforts, thus far unsuccessful, to discover an effective therapeutic, with 1081 Alzheimer's disease drug trials completed as of May 2019. The pessimism thus engendered has forestalled contingency planning for the potential major economic repercussions of a simple, quick cure. Yet, promising new research spotlighting the possible "trigger" role of infectious agents might allow some or all cases of Alzheimer's disease to be halted, reversed, or prevented with an antibiotic or antiviral compound, possibly even one already approved by drug regulators for other uses. The sudden advent of such an unexpected therapy would theoretically have dramatic impacts, both detrimental and beneficial, on the American economy. The damages would include a $414 billion shrinkage of Medicaid, Medicare and other revenues to all six sectors comprising the healthcare provider category. Nursing homes and skilled nursing facilities are projected to suffer the greatest loss of annual revenue: $51 billion and $16 billion, respectively. This would cause the loss of an estimated 654,000 jobs. Facility mortgage and commercial loan repayments could stop. Other adverse consequences would include detrimental effects on reserves for Social Security and pensions, cutbacks in dementia research funding, and reduced donations to Alzheimer's disease advocacy groups. Insurance company reserves for fixed payment annuities already sold could be jeopardized. However, an Alzheimer's disease cure would also create economic beneficiaries. Medicare and Medicaid would save up to a projected $195 billion annually. Life insurance companies and unpaid caregivers would also benefit financially. By identifying the healthcare sectors likely to be detrimentally impacted by a simple, quick Alzheimer's disease cure, contingency plans can be made in the U.S. and other countries to assist the foreseeable painful transitions for staff and facilities., (Copyright © 2019 The Author. Published by Elsevier Ltd.. All rights reserved.)

Objectives: To examine whether the share of pharmaceutical industry funds allocated to patient advocacy organizations (PAOs) is disproportionately large in the United States relative to other industrialized countries and to compare pharmaceutical companies' disclosure practices across industrialized countries., Methods: We examined funding of PAOs among the 10 largest pharmaceutical companies in 2016. We compared funding allocated to organizations across 8 large industrialized countries and pharmaceutical companies' disclosure practices in each country., Results: Only 6 of the 10 largest pharmaceutical companies disclosed their financial transactions with PAOs in the United States. All 10 companies disclosed transactions in France, Germany, and the United Kingdom, with varying levels of disclosure in other countries. In 2016, the 6 companies that disclosed transactions in the United States allocated 74% of their patient advocacy funding ($88 million) in the United States., Conclusions: The disproportionate funding of US PAOs in the absence of any disclosure requirements suggests that the United States should consider adoption of regulatory actions to enhance the transparency of relationships between the pharmaceutical industry and PAOs, and to ensure the integrity of public health decision-making.

Physicians' advocacy obligations are best understood as going beyond advocacy on behalf of individual patients, which I call the "individualistic view," to include advocacy for intelligent research-based allocation schemes that promote good outcomes and cost-effective care for all patients, which I call the "systemic view." This systemic view includes moving beyond self-interest to promote less-wasteful and more cost-conscious allocation decisions and the setting of priorities at all levels to expand health care access. It includes physician involvement in discussions with patients in the context of clinical care, involvement in the formulation and administration of benefit structures and other allocation policies, and, finally, involvement in promoting public dialogue about health care priorities. This involvement is based on a concept of a deliberative process that can result in "just enough" decisions within systems for the preservation and promotion of health care and other societal goods.

Patient advocacy organizations (PAOs) have long been regarded as important representatives of patient and caregiver interests in health policy debates. Recently, however, PAOs have attracted increased scrutiny over their financial ties to drug and device companies. In the past year, researchers and policymakers have called for the creation of a "sunshine law" requiring mandatory public reporting of industry payments to PAOs. Others have suggested that increased transparency would do little to address, and may even exacerbate, underlying concerns about proindustry bias among industry-funded PAOs. To date, however, the benefits of a sunshine law have not been well articulated, nor have objections to the idea been carefully addressed. In particular, little attention has been paid to clarifying the merits of statutorily mandated disclosure relative to those of increased voluntary disclosure by PAOs. I examine arguments for and against a sunshine law and conclude that the balance of reasons supports the enactment of such a law.

Those in hospitals and health care systems, when designing clinical programs for children with medical complexity, often talk about needing to develop and implement a system of risk stratification. In this article, we use the framework of an ethical evaluation of a health care program to examine what this task of risk stratification might entail by identifying specific and detailed issues that require particular attention and making a series of recommendations to help ensure that programs for children with medical complexity avoid potentially ethically problematic situations and practices., Competing Interests: POTENTIAL CONFLICT OF INTEREST: The authors have indicated they have no potential conflicts of interest to disclose., (Copyright © 2018 by the American Academy of Pediatrics.)

Recent approval of eteplirsen for Duchenne muscular dystrophy (DMD), a rare disease with few treatment alternatives, has reignited the debate over the U.S. drug approval process. The evolution of legal and regulatory restrictions to the marketing and sale of pharmaceuticals has spanned more than a century, and throughout this history, patient advocacy has played a significant role. Scientific evidence from clinical trials serves as the foundation for drug approval, but the patient voice has become increasingly influential. Although the gold standard for establishing safety and efficacy through randomized controlled trials has been in place for more than 50 years, it poses several limitations for rare disorders where patient recruitment for traditional clinical trials is a major barrier. Organized efforts by patient advocacy groups to help patients with rare diseases access investigational therapy have had a legislative and regulatory effect. After approval by the FDA, patient access to therapy may still be limited by cost. A managed care organization (MCO) with the fiduciary responsibility of managing the health of a population must weigh coverage decisions for costly therapies with questionable effectiveness against alternatives within the constraint of a finite budget. Even when the FDA deems a drug safe and effective, an MCO may determine that the drug should only be made available at a tier level where out-of-pocket costs are still too high for many patients. This limitation of availability may be due to cost, other treatment alternatives, or outcomes from existing clinical evidence. However, if the MCO makes a costly new treatment for a rare disease readily available, it may temporarily satisfy a small contingency at the cost of all of its members. This article examines the risks and benefits of patient-centered drug approval and the potential economic effect of patient-centered drug approval on population health., Disclosures: There is no funding to disclose. Mattingly reports advisory board fees from Summit Therapeutics and an educational grant from ALK, outside of this article. Simoni-Wastila has nothing to disclose. Mattingly took the lead in conceptualizing this Viewpoint article and writing the manuscript, along with Simoni-Wastila. Both authors contributed equally to manucript revision.

The Singapore National Stroke Association, registered in 1996, offers support and information to stroke survivors and caregivers, and aims to raise public stroke awareness. In the last 20 years, we have developed programs to equip stroke survivors and caregivers with knowledge, life skills, comfort, and opportunities for socialization and reintegration. We have on-going public education and advocacy initiatives. Obtaining funding, member recruitment, volunteer retention, and leadership renewal are on-going challenges. Singapore National Stroke Association will continue to strive for the betterment of stroke survivors, their caregivers, and the public.

Importance: Patient advocacy organizations (PAOs) are influential health care stakeholders that provide direct counseling and education for patients, engage in policy advocacy, and shape research agendas. Many PAOs report having financial relationships with for-profit industry, yet little is known about the nature of these relationships., Objective: To describe the nature of industry funding and partnerships between PAOs and for-profit companies in the United States., Design, Setting, and Participants: A survey was conducted from September 1, 2013, to June 30, 2014, of a nationally representative random sample of 439 PAO leaders, representing 5.6% of 7865 PAOs identified in the United States. Survey questions addressed the nature of their activities, their financial relationships with industry, and the perceived effectiveness of their conflict of interest policies., Main Outcomes and Measures: Amount and sources of revenue as well as organizational experiences with and policies regarding financial conflict of interest., Results: Of the 439 surveys mailed to PAO leaders, 289 (65.8%) were returned with at least 80% of the questions answered. The PAOs varied widely in terms of size, funding, activities, and disease focus. The median total revenue among responding organizations was $299 140 (interquartile range, $70 000-$1 200 000). A total of 165 of 245 PAOs (67.3%) reported receiving industry funding, with 19 of 160 PAOs (11.9%) receiving more than half of their funding from industry. Among the subset of PAOs that received industry funding, the median amount was $50 000 (interquartile range, $15 000-$200 000); the median proportion of industry support derived from the pharmaceutical, device, and/or biotechnology sectors was 45% (interquartile range, 0%-100%). A total of 220 of 269 respondents (81.8%) indicated that conflicts of interest are very or moderately relevant to PAOs, and 94 of 171 (55.0%) believed that their organizations' conflict of interest policies were very good. A total of 22 of 285 PAO leaders (7.7%) perceived pressure to conform their positions to the interests of corporate donors., Conclusions and Relevance: Patient advocacy organizations engage in wide-ranging health activities. Although most PAOs receive modest funding from industry, a minority receive substantial industry support, raising added concerns about independence. Many respondents report a need to improve their conflict of interest policies to help maintain public trust.

Often, novel gene and cell therapies provide hope for many people living with incurable diseases. To facilitate and accelerate a successful regulatory approval and commercialization path for effective, safe and affordable cell and gene therapies, the involvement of patient advocacy groups (PAGs) should be considered early in the development process. This report provides a thorough overview of the various roles PAGs play in the clinical translation of cell and gene therapies and how they can bring about positive changes in the regulatory process, infrastructure improvements and market stability., (Copyright © 2017 International Society for Cellular Therapy. Published by Elsevier Inc. All rights reserved.)

The 'Stakeholder Perspectives on Noninvasive Prenatal Genetic Screening' Symposium was held in conjunction with the 2015 annual meeting of the International Society for Prenatal Diagnosis. During the day-long meeting, a panel of patient advocacy group (PAG) representatives discussed concerns and challenges raised by prenatal cell-free DNA (cfDNA) screening, which has resulted in larger demands upon PAGs from concerned patients receiving prenatal cfDNA screening results. Prominent concerns included confusion about the accuracy of cfDNA screening and a lack of patient education resources about genetic conditions included in cfDNA screens. Some of the challenges faced by PAGs included funding limitations, lack of consistently implemented standards of care and oversight, diverse perspectives among PAGs and questions about neutrality, and lack of access to training and genetic counselors. PAG representatives also put forward suggestions for addressing these challenges, including improving educational and PAG funding and increasing collaboration between PAGs and the medical community. © 2016 John Wiley & Sons, Ltd., (© 2016 John Wiley & Sons, Ltd.)

Objectives: This study evaluated financial challenges, satisfaction with financial-management supports, and interest in additional or alternative supports among clients of a mental health center., Methods: Six focus groups were held with 39 clients of an urban community mental health center who reported having difficulty with their finances. Five focus groups were held with direct-care staff who provided services to the clients. Investigators used an inductive analytical approach to distill themes from notes taken during the focus groups., Results: Clients emphasized the challenges of living in poverty and described using complex strategies to sustain themselves, including negotiating benefits systems, carefully planning purchases, and developing and relying on social relationships. They spoke of having uneven access to tools and services for managing their money, such as advice from direct-care staff, representative payees, and bank accounts, and had varying opinions about their value. Noting concerns similar to those of clients, direct-care staff expressed frustration at the lack of support services for helping clients manage their finances. Both clients and staff expressed the need for more services to help clients with their finances., Conclusions: Findings suggest a need for more services to support people with mental illness to manage their finances, particularly a more flexible and broader range of options than are provided by current representative-payee mechanisms.

Unbefriended, incapacitated individuals who lack surrogates to make medical decisions present a complex problem to the healthcare providers who treat them. Adults without surrogates are among the most vulnerable in the community and are often alone and estranged from family, neglected and abused, and at risk of receiving inappropriate medical treatment. This article describes the program model and outcomes for the first 2 years of the Wishard Volunteer Advocates Program (WVAP), a guardianship program using trained, supervised volunteers as surrogates for unbefriended, incapacitated individuals. Of the 50 individuals enrolled during the study period, 20 were female, and 39 were Caucasian and 11 African American. Their average age was 67. Nineteen were insured with Medicare as primary and Medicaid as supplementary insurance. Ninety-eight percent had four or more comorbid conditions at the time of the index hospitalization. Before program referral, many lived alone in unsafe conditions. Adult Protective Services was involved in almost half of the cases at the time of the index hospitalization. Approximately half of the participants required some type of property management. Healthcare usage data demonstrated that most were not receiving medical care before WVAP enrollment; the data indicated a decrease in emergency department visits and hospitalization after WVAP enrollment. The WVAP completed Medicaid applications for 12 participants, resulting in $297,481.62 in reimbursement for the index hospitalization and a payer source for subsequent hospitalization and long-term care. The volunteer advocate model provides an efficient and quality mechanism for providing unbefriended individuals with surrogates., (© 2014, Copyright the Authors Journal compilation © 2014, The American Geriatrics Society.)

The attainment of United Nations Millennium Development Goal 5 has proven elusive for many countries. Efforts to reduce maternal mortality require concerted evidence-based efforts from all key players, including professional organizations. The Association of Obstetricians and Gynaecologists of Uganda used the results of maternal and perinatal death review to develop and pilot advocacy programs with parliamentarians, media, and government that aimed to improve maternal and newborn health in Uganda. This work translated to further parliamentary debate on the topic, increased resource allocation by government, and improved media-related public education., (Copyright © 2014. Published by Elsevier Ireland Ltd.)

In the last decade, many disease-focused foundations and patient advocacy organizations that support biomedical research have created patient registries and biobanks. This article reviews the motivations behind the creation of those biobanks and how they are different from biobanks sponsored by government or industry. It also discusses some of the different funding models being employed by these organizations. Finally, it highlights some of the unique challenges faced by disease-focused foundations and advocacy organizations that sponsor biobanks, and how they are overcoming those challenges to achieve both financial and operational sustainability.

: This article discusses the relationship between disease-advocacy groups and the revision process for the Diagnostic and Statistical Manual of Mental Disorders. We discuss three examples in which patient-advocacy groups engaged with the DSM-5 revision process: Autism Speaks' worries about the contraction of the autism diagnostic category, the National Alliance on Mental Illness's support for the inclusion of psychosis risk syndrome, and B4U-ACT's critique of the expansion of pedophilia. After a descriptive examination of the cases, we address two prescriptive questions. First, what is the ethical basis for patient and advocate influence on DSM diagnoses? Second, how should the American Psychiatric Association proceed when this influence comes into conflict with other goals of the revision process? We argue that the social effects of, and values embedded in, psychiatric classification, combined with patient and advocates' experiential knowledge about those aspects of diagnosis, ethically justify advocate influence in relation to those particular matters. However, this advocate influence ought to have limits, which we briefly explore. Our discussion has implications for discussions of disease categories as loci for social movements, for analyses of the expanding range of processes and institutions that advocacy groups target, and for broader questions regarding the aims of the DSM revision process.

Local Long-Term Care Ombudsman Programs (LLTCOPs) protect the health, safety, welfare, and rights of residents in long-term care (LTC) facilities. This study examines the (a) existing resources available to LLTCOPs in Georgia, California, and New York, (b) relationship of resources to LLTCOP's reported effectiveness in meeting its federal mandates, and (c) state-specific mediating factors influencing LLTCOPs' resources and reported effectiveness. Quantitative and qualitative data from the National Ombudsman Reporting System (NORS) and a telephone survey of LLTCOPs in Georgia, California, and New York were collected and analyzed. Resource adequacy, as measured by beds per full-time equivalent staff (beds/FTE), is inconsistently associated with effectiveness in meeting federal mandates across and within the states studied. Analysis of alternate resource measures suggests a threshold of LLTCOP size, under which program effectiveness may be lower. LLTCOPs report the changing LTC environment and additional state mandates as factors influencing resource adequacy.

In the context of scarce public resources, patient interest groups have increasingly turned to private organizations for financing, including the pharmaceutical industry. This practice puts advocacy groups in a situation of potential conflicts between the interests of patients and those of the drug companies. The interests of patients and industry can converge on issues related to the approval and reimbursement of medications. But even on this issue, interests do not always align perfectly. Using the Quebec example of Coalition Priorité Cancer (CPC) as a case study, we examine the ethical issues raised by such financial relationships in the context of drug reimbursement decision-making. We collected, compiled and analyzed publicly available information on the CPC's organization and activities; this approach allowed us to raise and discuss important questions regarding the possible influence exerted on patient groups by donors. We conclude with some recommendations., (Copyright © 2013 Longwoods Publishing.)

Background: The future direction of American health care has become increasingly controversial during the last decade. As healthcare costs, quality, and delivery have come under intense scrutiny, physicians play evolving roles as "advocates" for both their profession and patients via healthcare policy. Hospital-physician alignment is critical to the future success of advocacy among orthopaedic surgeons, as both hospitals and physicians are key stakeholders in health care and can work together to influence major health policy decisions., Questions/purposes: We (1) define the role of advocacy in medicine, specifically within orthopaedic surgery; (2) explore the history of physician advocacy and its evolution; (3) examine the various avenues of involvement for orthopaedic surgeons interested in advocacy; and (4) reflect on the impact of such activities on the future of orthopaedic surgery as it relates to hospital-physician alignment., Methods: We performed a comprehensive review of the literature through a bibliographic search of MEDLINE(®) and Google Scholar databases from January 2000 to December 2010 to identify articles related to advocacy and orthopaedic surgery., Results: Advocacy among orthopaedic surgeons is critical in guiding the future of the American healthcare system. In today's world, advocacy necessitates a wider effort to improve healthcare access, quality, and delivery for patients on a larger scale. The nature of physician advocacy among orthopaedic surgeons is grounded in the desire to serve patients and alleviate their suffering. Participation in medical societies and political campaigns are two avenues of involvement., Conclusions: The increasing role of government in American health care will require a renewed commitment to advocacy efforts from orthopaedic surgeons. The role of advocacy is rapidly redefining the continuum of care to a trinity of clinical excellence, innovative research, and effective advocacy. Failure to recognize this growing role of advocacy limits the impact we can have for our patients.

In June 2012, the German Medical Association (Bundesärztekammer) published the statistics of medical malpractice for 2011 [1]. Still ENT-specific accusations of medical malpractice are by far the fewest in the field of hospitals and actually even in the outpatient context. Clearly most of the unforeseen incidents still occur in the disciplines of trauma surgery and orthopedics. In total, however, an increasing number of errors in treatment can be noticed on the multidisciplinary level: in 25.5% of the registered cases, an error in treatment was found to be the origin of damage to health justifying a claim for compensation of the patient. In the year before, it was only 24.7%. The reasons may be manifold, but the medical system itself certainly plays a major role in this context: the recent developments related to health policy lead to a continuous economisation of medical care. Rationing and limited remuneration more and more result in the fact that therapeutic decisions are not exclusively made for the benefit of the patient but that they are oriented at economic or bureaucratic aspects. Thus, in the long term, practising medicine undergoes a change. According to the §§ 1, 3 of the professional code of conduct for doctors (Musterberufsordnung für Ärzte; MBO-Ä) medical practice as liberal profession is principally incompatible with the pursuit of profit, however, even doctors have to earn money which more and more makes him play the role of a businessman. Lack of personnel and staff savings lead to excessive workloads of physicians, caregivers, and nurses, which also favour errors. The quality and even the confidential relationship between doctor and patient, which is important for the treatment success, are necessarily affected by the cost pressure. The victims in this context are not only the patients but also the physicians find themselves in the continuous conflict between ethical requirements of their profession and the actual requirements of the realities in the healthcare field. But also the technical and scientific progress bear new risks beside the therapeutic successes, further especially bigger hospitals require high efforts regarding organisation favouring errors in cases of deficiencies. Even the increasing juridification of the medicine that is expected to achieve a provisional highlight with the planned law of patients' rights leads to an important focus on the quality of medical care [2]. The explicit legal regulation of patients' rights, which have never been out of question up to now, confirms the impression of patients who have to be protected from their doctors. This development favours a natural mistrust in the quality of the treatment and the desire of legal verification in cases of treatment failures. A totally perfect and error-free treatment, however, will never occur. Already this fact leads to the obligation to do everything possible to reduce the risk to an absolute minimum. The risks that might arise from a relation of treatment are manifold. Not only may the patient undergo risks that arise in particular from lacking or insufficient briefing, complications, or medical malpractice. Also the doctor has to fear legal consequences if he does not stick clearly to the increasing requirements that jurisdiction and legislation impose - not least by the planned law of patients' rights. In the following, the basic principles and particularities will be described that apply for the patients' briefing. Further the different types of medical malpractice will be explained in relation to the resulting procedural consequences. Finally some current problematic fields will be described with regard to other possible liabilities or responsibilities of physicians in hospitals or doctor's offices., (© Georg Thieme Verlag KG Stuttgart · New York.)

Setting: A national-level study in four districts, one each in all four provinces of Pakistan, a high tuberculosis (TB) burden country., Objectives: To examine how advocacy, communication and social mobilisation (ACSM) campaigns by the National Tuberculosis Programme (NTP) in Pakistan engaged the populations of interest, to what extent they were successful in promoting services and desired behaviours, and how these campaigns could be improved., Design: This was a qualitative case study comprising 13 focus groups and 36 individual interviews in four districts. All three levels of the ACSM programme, i.e., planners, implementers and beneficiaries, were included among the respondents., Results: Improved political commitment, availability of funds, partnership with the private sector, visibility of the NTP and access to directly observed treatment (DOT) were achieved. Individual and social environmental issues of poor patients and marginalised communities were addressed to some extent, and could be improved in the future. Empathy and respect from physicians, and better service delivery of the DOTS-based programme were desired by the patients., Conclusions: The strategic advocacy ensured political and financial commitment; however, identification and targeting of vulnerable populations, and carrying out context-based social mobilisation and effective counselling are crucial to increase the use of DOT. Evaluations should be built-in from the beginning to increase the evidence on effectiveness of ACSM campaigns.

The practice recommendations discussed here are based on the findings of the national survey as well as the opinions of the authors. The recommendations that are proposed here are not exhaustive and are aspirational in intent and are likely to evolve with time. Practice guidelines are recommended for legal and regulatory issues (e.g., state or federal laws), consumer or public benefit (e.g., improving service delivery, avoiding harm to the patient, decreasing disparities in underserved or vulnerable populations), and for professional guidance (e.g., new role, professional risk management issues, advances in practice). Without such practice guidelines, donors, and indirectly the candidates, may be at increased risk for possible bias or undue harm., (© 2013 John Wiley & Sons A/S.)

Decisions by third-party payors that are restricting delivery of appropriate IgG treatment for primary immunodeficiency disease (PIDD) are summoning action from patients, physicians, and their organizations to ensure that high quality treatment remains accessible. Some of the strongest advocacy to date is from patient organizations, such as the Immune Deficiency Foundation (IDF), which strive to educate stakeholders on key issues that determine patient access to appropriate IgG treatment. These issues include the ability to choose the appropriate site of care based on a patient's experience and circumstance and greater awareness of product choice. Advocacy by physicians on these issues at the local level is needed, as are national efforts by organizations such as the American Academy of Allergy, Asthma & Immunology and their regional societies.

The effectiveness of eye care service delivery is often dependant on how the different stakeholders are aligned. These stakeholders range from the ministries of health who have the capacity to grant government subsidies for eye care, down to the primary healthcare workers who can be enrolled to screen for basic eye diseases. Advocacy is a tool that can help service providers draw the attention of key stakeholders to a particular area of concern. By enlisting the support, endorsement and participation of a wider circle of players, advocacy can help to improve the penetration and effectiveness of the services provided. There are several factors in the external environmental that influence the eye care services - such as the availability of trained manpower, supply of eye care consumables, government rules and regulations. There are several instances where successful advocacy has helped to create an enabling environment for eye care service delivery. Providing eye care services in developing countries requires the support - either for direct patient care or for support services such as producing trained manpower or for research and dissemination. Such support, in the form of financial or other resources, can be garnered through advocacy.

Amalyste is a French patient-advocacy group for victims of two very serious adverse drug reactions: Lyell and Stevens-Johnson syndromes. The aims of this organisation are to represent the interests of patients who have experienced these syndromes; to better inform the public about these syndromes; to provide analyses of drug-related risks; and to demand collective compensation for victims of serious adverse drug reactions. The following text is our translation of an Amalyste position statement on drug-related risks. It provides valuable food for thought, both for healthcare professionals and for drug regulatory agencies, and has the potential to improve practice (a).

Background: An estimated two billion people globally suffer from undernutrition, and yet, despite consensus that improving nutrition is one of the best investments for promoting health and alleviating poverty, nutrition remains chronically underfunded and under-prioritized. Successfully scaling global efforts to address undernutrition requires an understanding of the landscape of potential donors and partners that can be mobilized toward improving nutrition globally., Objective: To conduct independent reviews of the European and US landscapes of donors and partners focused on undernutrition, and identify opportunities to leverage outreach and advocacy efforts toward increased engagement and funding for nutrition., Methods: We present the primary findings from two independent landscaping studies conducted between September 2010 and March 2011. Research methods included desk-based research and interviews with stakeholders in bilateral and multilateral organizations (n=19), private industries (n=46), private funders (n=16), and civil society organizations (n=29). We report the key thematic findings by sector and the challenges and opportunities for increased engagement and funding for nutrition., Results: Nutrition is a growing priority for a number of stakeholders across sectors. Strategic commitment to nutrition is emerging across multilateral and bilateral donor agencies; the private sector is increasingly interested in engaging in addressing undernutrition; and nongovernmental and civil society groups are engaged in nutrition advocacy. Key opportunities to increase funding and partnership across sectors include leveraging bilateral and multilateral investments for nutrition across development priorities while ensuring sound commitments within donor policies, focusing on engaging the private sector across the food value chain, mobilizing new resources from private funders through effective communication and outreach, and continuing to prioritize ongoing impact assessment across a range of interventions., Conclusions: Understanding the current European and US landscape of nutrition stakeholders helps to inform efforts to scale the type of investments and partnership needed to make effective impacts on undernutrition globally. Turning the existing opportunities into results will require effective coordination, strong communication, and active participation across sectors.