The work of the National Consumers League is making a difference in people’s lives across the country. Meet some of the consumers touched by our programs.
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Preventing yet another victim
Paige, 55, a Nashville wife and mother of two, answered an employment ad for secret shoppers. Before sending payment to the scammers, she reached out to NCL.
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Building a stronger generation
A grease fire flared up in Decklan’s kitchen. As his family scrambled and panicked, fearing that the whole house might erupt in flames, Decklan remained calm. He hurried over to the pantry, grabbed some baking soda, and dumped it on the fire quickly extinguishing the blaze.
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Script Your Future saved my life
Cincinnati resident Charles, 45, lost his computer business — and health insurance— during a time of economic downturn. A diabetic, Charles was now unable to afford his medication. He stopped taking it which made him seriously ill and put his life at risk.
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For a safer workplace
Jeremy is a fast-food worker who has been employed at a number of Chipotle restaurants in New York City. When he was just 20 years old, he took part in an NCL research project that revealed that management practices within the fast food chain were putting workers—and food safety for customers—at risk.
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Government at all levels must act to insure access to affordable quality health care for all citizens. As a matter of public policy, the government’s role in health care must not be limited to the reimbursement of health care practitioners and facilities for the treatment of the diseased or injured. Rather, government must assume its responsibility to further the total health of consumers, including the quality of their environment, the promotion of healthy lifestyles, their nutritional needs, occupational health and safety, and right to comprehensive preventive health care. An increase in research on the causes of diseases, which eventually could lead to prevention, is critically needed. While medical care itself is inevitably technical and therefore must be left to physicians and other qualified health care providers, it is important that consumers be genuine participants in their own care and have a significant role in shaping public policies which affect them and their families.
There is also a critical need for coordinated, pluralistic, and cost-effective health care delivery systems to deliver high-quality services that are accessible to all people without regard to age, sex, race, disability, sexual orientation, social or economic condition, or residence.
Towards these ends, the League supports:
- Primary care as the foundation of a system that provides consumers a full range of quality providers, including physicians, nurses, pharmacists, dentists, nutritionists, and mental
- Attention to populations with special needs such as children, pregnant women, the poor, people with HIV and AIDS, the elderly, people with mental and physical disabilities, and non-English speakers;
- Strong emphasis on the development of physician practice guidelines and nursing research based on health outcomes;
- A network of care available to persons living in underserved urban and rural areas to coordinate fragmented delivery systems, often complicated by inadequate communications and transportation; and development of more effective methods to correct the shortage of medical and health personnel in medically underserved areas–both rural and urban;
- Long-term care integrated with acute health care services and available in the most appropriate setting;
- Progressive health care financing based on a uniform payment system with community rating. Deductibles, co-insurance, and co-payments are obstacles to full access to the health care system and should be eliminated or at least held to a minimum;
- Specific published prices for health care services and the prohibition against providers requiring consumers to pay additional fees;
- Consumer access to comprehensive and accurate information and education about the range and implications of available health care options;
- Managed care organizations, including health maintenance organizations, as a choice for consumers with participation on a voluntary basis;
- Requirement for a safe environment in workplaces, including the proper disposal of industrially related toxics and research on occupational health hazards. Workplaces that are dangerous or expose employees to long-term health risks impose substantial burdens on the system;
- The requirement that when new medical technologies are disseminated that there be adequate assessment of the effectiveness and requirements for training and teaching so that these technologies do not harm quality of medical care and possibly greatly add to the cost;
- Careful monitoring and regulating of promotion and advertising of prescription drugs;
- Consumers’ right to an appeals process to contest unfair administrative or medical decisions;
- Unrestricted access of consumers to their medical records, and their right to correct inaccurate information and control dissemination of confidential information; and
- Consumer representation in either an administrative, advisory, or advocacy capacity at every level and in every sector of health care.
In addition, NCL:
- Endorses the concept of comprehensive health care as a universal right and joins with other groups in health coalitions to support a national health plan. Proposals should include dental care, prescription drugs, psychiatric care, and long-term care to the extent that it is medically necessary;
- Calls for health-care cost containment policies, both state and federal, as well as voluntary efforts to restrain health costs through broad community coalitions,
labor/management cooperation, and collective bargaining negotiations;
- Opposes cuts in Medicare and Medicaid which are of vital importance to the elderly, disabled, and poor; and supports all efforts to make these programs more responsible to the health-care needs of these groups by expanding covered services, and, in Medicaid, expanding eligibility to all the poor and indigent;
- Supports expanding Medicare services to include eyeglasses, hearing aids, foot care, preventive care, and long-term care in all appropriate settings, including home health care, assisted living, hospices, and intermediate and skilled nursing homes. Financial barriers to participation in Medicare, such as high deductibles, coinsurance, and premiums should be reduced or eliminated;
- Calls for expanding Medicare to include a voluntary, comprehensive, affordable, and guaranteed prescription drug benefit available to all beneficiaries;
- Expresses concern about the rapid takeover by giant, for-profit conglomerates of health care services of all kinds – hospitals, nursing homes, home health care, HMOs, managed care organizations, and other health care services – and calls for financial and other support for continuing, strong, and community-oriented non-profit health care institutions;
- Urges, in response to the misdistribution of primary care physicians and other health personnel, substantially increased federal assistance to medical, public health, and allied health professional schools and to economically disadvantaged students, in order to encourage better distribution of health professionals to meet consumer demand; and
- Believes health professionals should adhere to a high standard of ethical behavior. This includes avoiding conflict of interest or undue influence by marketing appeals in decision-making.
—Adopted December 13, 2000
Health Information Privacy
1. Right to Privacy — An individual has a right to privacy with respect to individually identifiable health information. The individual should have the right to decide to whom, and under what circumstances, their individually identifiable health information will be disclosed.
2. Informed Consent and Notice — Health information that identifies a specific individual should not be disclosed without that individual’s explicit consent, unless authorized by law. Individuals should be notified about how their medical records are used and when their individually identifiable health information is disclosed to third parties.
- Informed consent is a process, which ensures that patients understand a proposed treatment or procedure, and can intelligently share in responsible decision making. Implicit in this principle is the right of a patient to decline the proposed treatment or procedure. Included among the basic elements of informed consent must be a statement describing the extent to which the confidentiality of the patient’s medical records will be maintained. Use or disclosures without informed consent should be permitted only under exceptional circumstances; for example, if a person’s life is endangered, if there is a threat to the public health, or if there is a compelling law- enforcement need. Disclosure of individually identifiable health information to someone other than the patient or the caregiver solely for marketing or commercial purposes should never be permitted without informed consent.
- Individuals should be given written, easy-to-understand notice of how information will be used, so that they can make informed, meaningful decisions about uses and disclosures of their health information.
3. Security Safeguards and Penalties — Safeguards, including computerized “walls” and electronic audits, should be utilized to prevent the unauthorized release and possession of computerized medical information.
- The increased use of electronic health record data storage creates opportunities for greater protection of health information through a number of computer security methods, many of which already are utilized by other industries. Providers, health plans, and other users of health information should seek to incorporate electronic security measures, such as passwords, electronic audits, and encryption, to avoid unnecessary access and possible misuse of health information. There should be penalties for violation and private right of action for individuals harmed by a breech in the security of their health information. States should adopt common operating standards for data security and patient privacy protection, including clearly established penalties for violations not covered by HIPAA (such as identity theft), and an accountable means for monitoring, enforcement, and prosecution of violations.
4. Individual Right to Access–Health care consumers should have access to their medical record and the ability to propose corrections or amendments to the record.
- In order to be an active participant in health care, consumers should be able to obtain, inspect, and, if necessary, offer corrections or amendments to their medical record. Erroneous information contained in the medical record can result in discrimination with respect to insurance and employment.
- No personal health information should be available to a provider or health professional that is not also available to the patient (with exception for cases of danger to the patient).
- Unreasonable or unaffordable fees should not impair the ability of each person to access, review or supplement their personal health information.
- People must be able to receive complete paper copies of any of their information.
5. Right to Private Action — For violations of the right to privacy and security of health information, consumers should have a right to private action.
6. Research Access — Certain needs for health information, such as research and public health interests, should be recognized and met to the extent possible through access to unidentifiable data. Access to identifiable health data for properly constituted institutional review board (IRB)-approved studies should be available, when necessary.
- Research that will improve the health and reduce health risks of all Americans should be supported. In certain research settings, medical information should be made available to researchers without prior written authorization, under certain conditions. Such conditions should include a determination by a properly constituted IRB that the research involves minimal risks to participants, the absence of consent would not adversely affect the rights or welfare of participants, the research could not practicably be carried out if consent were required.
- Researchers should be responsible for removing the personal identifiers and for providing the IRB with assurances that the information will be protected from improper use and unauthorized additional disclosures. In a GAO report published in February 1999 (GAO/HEHS-99-55, Medical Records Privacy), it was stated “IRB review does not ensure the confidentiality of medical information used in research because the provisions of the Common Rule related to confidentiality have limitations.” It is suggested in the report that organizational policies be in place, which restrict access to personally identifiable information to authorized individuals, and that organizations impose data security safeguards and encryption policies to ensure confidentiality.
7. Education–The public and users of health information should be educated about the need to maintain the confidentiality of medical record information (See NCL Consumer Education policy).
- As overwhelming opportunities exist for the public, health professionals, clinicians, insurers, employers, and other users of health information to access private medical records, it is important that there be a national, systemic approach to educating these users about the importance of protecting medical records.
8. Consumer Information Programs–NCL supports pharmaceutical care and pharmacy programs, which provide useful information to consumers about their prescription drugs; however, health information privacy must be protected (See NCL Consumer Education policy). Inappropriate or suboptimal uses of prescription medicines result in needless deaths and suffering, as well as billions of dollars of added hospitalization costs and loss of productivity. Armed with greater and better knowledge about the medicines they take, consumers will be empowered to make more informed decisions about their health and health care. NCL strongly supports programs to provide consumers with truthful and accurate information on prescription drugs. NCL participated in developing and supports HHS’s “MedGuide Action Plan,” which calls for uniformly structured, “consumer friendly” information about the risks and uses of a prescription drug, to be provided to the patient by the pharmacist, at the time a drug is dispensed.
- NCL has also actively supported the concept of pharmaceutical care and pharmacy programs which provide information about appropriate medication regimes, self-monitoring and self-reporting, refill reminders, disease state information programs, and drug therapy education, including information about alternative therapies to help the consumer understand treatment and to assure better health.
- Any consumer information programs should provide the consumer, at the outset, with a complete description of the program, its potential benefits, and an explanation of how the program works. If possible, this information should be provided by the physician or other health care provider. At a minimum, this information should be provided by the pharmacist before the patient becomes involved in the program. Pharmacies, to the best of their knowledge, should fully inform consumers about the intended use of any confidential health care information in pharmacy records at the time they receive their prescription. Participation in these programs should be entirely voluntary, and consumers should have easy-to-exercise options to withdraw from any information program at any time.
––Adopted December 9, 2005
Generic Drugs and Biosimilars
The National Consumers League supports access to prescription drugs that are safe, effective, and affordable for all. While there is a plethora of proposed policy solutions to reduce drug prices and ensure that Americans get the prescriptions they need, one of the most effective strategies is increasing the availability and usage of generic drugs. The FDA requires generic drugs to have the same active ingredient, strength, dosage, and route of administration as their brand-name equivalents. They are just as safe and effective as their brand-name counterparts, and far cheaper.
Generic drugs can enter the market once the patent protections for brand-name drugs expire, and when multiple options exist on the market, competition drives prices down. They are sold at much lower prices because they can utilize the data collected from the previous clinical trials for the brand-name drug in their development process. To be approved, generic drugs need to show that they are “bioequivalent” to the brand-name drug, meaning that they must contain the same active ingredient and act the same way in the body. The FDA conducts rigorous testing to ensure that generics meet these standards. When multiple generics enter the market, they are typically 85 percent cheaper than brand-name drugs and more generics are produced now than ever, with 2019 setting a record for having the most new generics approved.
Similarly, biosimilars represent a cheaper, yet high-quality alternative to biologics, a typically expensive class of drugs which are most often injectables. In fact, biologics and other specialty drugs comprise nearly half of all prescription drug spending, yet only a small number of patients use them. Biosimilars are not completely identical to their brand-name counterparts, but they do work in the same way and have no meaningful difference. Due to the often high costs of biologics, increasing the usage and availability of biosimilars is a very effective solution for reducing drug costs and increasing access to innovative medicines for all patients.
Although generics already comprise 90% of all prescriptions filled in the US, there is still room to expand their availability- especially for new drugs. We support the good work the FDA has done with drug companies to move drugs to a generic equivalent when the patent expires on the brand. We also encourage the FDA to work with manufacturers to speed up the process of developing and approving new generics. NCL is constantly working to raise awareness with patient and consumer communities about the high quality of generic drugs and their overall affordability.
We believe that expanding the use of generics and biosimilars is a far better option for making drugs more affordable than, say, drug importation, which is a cumbersome, unrealistic, and unsafe policy some have proposed to keeping drug costs down.
—Adopted July 2021
NCL supports the enactment of policies that will ensure the safety and efficacy of prescription drugs and expand access to all Americans, while ensuring that the United States can continue to be a leader in developing groundbreaking new pharmaceuticals. As a nation, we must continue to maintain integrity within the drug supply chain and support research and development on cutting-edge pharmaceuticals, while engaging in stringent regulation of new and existing drugs to ensure their safety and efficacy.
Approval from the U.S. Food and Drug Administration (FDA) is recognized around the world as the gold standard for guaranteeing the safety and efficacy of new drugs. In order to ensure that all pharmaceutical products on the market are proven safe and effective, and continue to undergo rigorous inspections, NCL believes that we need a robust and well-funded FDA. A well-funded FDA will support the operations needed to deliver new drugs and generics to consumers in a timely manner. The FDA is also in a unique position to promote increased diversity in clinical trials, which would bring about greater efficacy for treatments administered to racial and ethnic minority communities, aiding in the fight against systemic health inequities.
Vigilant post-market surveillance and continuous monitoring of pharmaceuticals on the market further ensures that they are safe and manufactured in the proper manner. This oversight is essential for protecting American consumers and guaranteeing that they are always getting the highest quality medications. To uphold its mission to preserve the fidelity of the American pharmaceutical market, the FDA must be given the powers necessary to exercise enforcement of its oversight authority.
Every aspect of the drug sector must consider the needs of the patients who ultimately rely upon these prescriptions. Consumers should be central to the American pharmaceutical system. The pharmaceutical industry needs to educate consumers about where to report adverse side effects, and advertisements should be compelled to provide consumers with transparent information about the risks and benefits of the product. Federal regulatory action needs to have oversight of drug manufacturers’ advertising practices to eliminate deceptive efficacy and safety claims.
Consumers want to make informed decisions about their prescriptions with advice from their doctors, pharmacists, and other relevant healthcare professionals based on their medical needs. We call on drug companies to work with health care providers to ensure patients are properly educated about the medicines they take, and raise awareness of the pharmaceutical development process.
Pricing transparency is critical to lowering prescription drug prices in the United States. Excessive prescription drug costs are directly linked to poor medication adherence and contribute to health disparities when patients cannot afford the medicines they need. We understand the drug manufacturing system relies on rebates to Pharmacy Benefit Managers (PBMs), policymakers need to ensure those discounts are being passed to consumers and not siphoned away from them by PBMs. Americans can only truly benefit from pharmaceutical products if they can afford them.
—Adopted August 2021
Prescription Drug Importation
The National Consumers League believes that all Americans should have access to safe and effective prescription medications and supports sensible efforts to lower drug costs for patients. We do not believe drug importation is a safe and effective strategy. Drug importation has long been considered a risky policy for lowering costs. Among the problems with drug importation is that implementing such a program would require significant federal funding to effectively mitigate risks to public safety. Drugs imported from abroad intended to be sold in foreign markets would not have gone through the rigorous inspection and certification process in order to meet U.S. standards, making the U.S. prescription drug market vulnerable to dangerous counterfeit products. Four former FDA heads, two who served during the Obama administration — Robert Califf and Margaret Hamburg — and two who served under former president George W. Bush — Andrew von Eschenbach and Mark McClellan oppose drug importation for just these reasons.
Any prescription drug importation program authorized by the Food and Drug Administration should ensure that the system poses no additional risk to the public’s health and safety, while achieving a reduction in the cost of covered products. Currently, the FDA itself has said that it does not have the capacity to inspect a multitude of imported medicines and the cost for doing so would offset most of the promised savings from a program.
The influx of poorly inspected drugs to the U.S. could also create a two-tiered prescription drug market where the poorest and most vulnerable consumers would face the health hazards from such drugs, while more affluent Americans would have access to the more reliable drugs. Such a system would exacerbate the health inequities already present in our society. Alternative solutions to high drug prices exist – like approving more generic drug options more quickly – which are far more effective at lowering drug costs without posing risks to the health and safety of American consumers.
—Adopted June 2021