In Part 1 I outlined how the war on drug abuse and addiction has resulted in less privacy, increase scrutiny of citizens by government agencies, law enforcement and a wave of conservatism which has created a perfect storm of such. In this part I look at the recent history of trying to adopt into law a Patient Bill of Rights which would help protect us from the loss of civil freedoms and paying the cost of fraud.
The History of a Patient Bill of Rights
A patient bill of rights would be a list of guarantees for those receiving medical care. It could take the form of laws or non-binding declarations. Usually a patient bill of rights would guarantee patient information privacy, protection from unscrupulous providers, the exclusion of government interference in individual medical decisions and patient autonomy over individual medical decisions.
In 2001 the United States Congress considered a bill to safeguard patients’ rights. A Bipartisan effort sponsored by Senators Edward Kennedy and John McCain, the “Bipartisan Patient Protection Act” (S.1052), contained new guidelines for what health maintenance organizations had to cover and granted new rights for patients to sue in state or federal courts, if they are denied needed care. The effort was spurred by rising concerns over how HMO’s restricted patient access to medical care by denying patients coverage for procedures and treatments they considered too expensive. One of the main themes was denying coverage based on pre-existing conditions which kicked in whenever an individual changed carriers due to a change in employment. Other unfair practices identified were bonus incentives paid to primarily care providers for keeping patients out of hospital for more expensive diagnostic procedures and treatments, resulting in an increase mortality rate in patients with insurers who did so.
Both branches of Congress passed different versions of the proposed law that would have provided patients key rights such as faster access to emergency care and medical specialists. The Senate version included measures which would provide patients with adequate means to enforce those rights. The Senate version would have provided a wider range of rights for patients. It would have ensured those with health plans the right to:
- have medical decisions made by a doctor
- see a medical specialist
- go to the closest emergency room
The bill was passed by the Senate by a vote of 59–36 it was then amended by the House and returned to the Senate where failed.
Insurance Industry Resistance
A Cigna whistleblower and former senior executive Wendell Potter, has written that the insurance industry has worked to kill “any reform that might interfere with insurers’ ability to increase profits” by engaging in extensive and well-funded anti-reform campaigns. The industry, however, “goes to great lengths to keep its involvement in these campaigns hidden from public view,” including the use of “front groups.” In a successful 1998 bid to kill the Patient Bill of Rights, the insurers formed a front group called the Health Benefits Coalition. While the group was billed as a broad-based business coalition that was led by the National Federation of Independent Business and included the U.S. Chamber of Commerce, the Health Benefits Coalition in reality it got the lion’s share of funding and guidance from big insurance companies and trade associations. Like most front groups, the Health Benefits Coalition was set up and run out of one of Washington’s biggest PR firms. They provided all the staff work for the Coalition and the tactics worked. Industry allies in Congress made sure the Patients’ Bill of Rights would not become law.
When Managed Care began back in the 1980’s the promise made was that insurance companies would lower costs by packaging groups of patients through employer sponsors health insurance, providing lower cost and easier entry into covered healthcare by more individuals. Twenty years later if you can’t afford top tier policies, what you’ve lost is the ability to select a doctor of your choice, form collective bargaining groups because of a monopoly on healthcare insurance, decision making power over the types of medical care you receive and if Republican have their way, exclusion from coverage due to a pre-exiting conditions. The profits from these efforts has gone into the pockets of insurers and to physicians in the form of incentives, keeping patients away from diagnostic procedures or hospitalization or having a say in their medical care.
In 1995 the Association of American Physicians and Surgeons (AAPS), adopted a list of patient freedoms which were modified and adopted as a nonbinding ‘Patients’ Bill of Rights where participation by healthcare providers was an elective one. It all sounds great but which choice do you think healthcare providers choose; increased profits or social consciousness?
The text of the AAPS Patients’ Bill of Rights reads:
- All patients should be guaranteed the following freedoms:
- To seek consultation with the physician(s) of their choice
- To contract with their physician(s) on mutually agreeable terms
- To be treated confidentially, with access to their records limited to those involved in their care or those designated by the patient
- To use their own resources to purchase the care of their choice
- To refuse medical treatment even if it is recommended by their physician(s)
- To be informed about their medical condition, the risks and benefits of treatment and appropriate alternatives
- To refuse third-party interference in their medical care, and to be confident that their actions in seeking or declining medical care will not result in third-party-imposed penalties for patients or physicians
- To receive full disclosure of their insurance plan in plain language, including:
- CONTRACTS: A copy of the contract between the physician and health care plan, and between the patient or employer and the plan.
- INCENTIVES: Whether participating physicians are offered financial incentives to reduce treatment or ration care.
- COST: The full cost of the plan, including copayments, coinsurance, and deductibles.
- COVERAGE: Benefits covered and excluded, including availability and location of 24-hour emergency care.
- QUALIFICATIONS: A roster and qualifications of participating physicians including any disciplinary actions by insurance carriers, medical boards or the DEA.
- APPROVAL PROCEDURES: Authorization procedures for services, whether doctors need approval of a committee or any other individuals, and who decides what is medically necessary.
- REFERRALS: Procedures for consulting a specialist, and who must authorize the referral.
- APPEALS: Grievance procedures for claim or treatment denials.
- GAG RULE: Whether physicians are subject to a gag rule, preventing criticism of the plan.
While some insurance companies and healthcare organization have adopted some of these or variations of them, not all have, nor have they ever become law. Those that exist come at an elevated cost in the form of higher insurance premiums.
A Patient Bill of Rights would include:
- Ensuring of peoples’ physical and mental integrity, life, and safety; protection from discrimination on grounds such as type of medical treatment, race, gender, sexual orientation, national origin, color, age, political affiliation, ethnicity, religion, and disability and individual rights such as privacy and the freedom of thought, speech, religion, press, assembly, and movement.
- A bill of rights may be entrenched or unentrenched. An entrenched bill of rights cannot be amended or repealed by a country’s legislature through regular procedure, instead requiring a supermajority or referendum; often it is part of a country’s constitution, and therefore subject to special procedures applicable to constitutional amendments. A bill of rights that is not entrenched is a normal statute law and as such can be modified or repealed by the legislature at will.
- A patient bill of rights should include as entitlements:
- the right to make decisions regarding medical care
- the right to accept or refuse treatment without coercion
- a written document detailing treatment risks, benefits, expected outcomes, and justifications for medical judgements used for each treatment option as part of the informed consent
- guarantees patients access to information, fair treatment, and autonomy over medical decisions
- a guarantee of due process in hearing, investigating and settling disputes
- advocacy for those subjected to ethics violations
For chronic pain patients, many of these rights have been threatened, some lost and others never existed and all citizens are now affected with new guidelines which impact acute pain management. In the meantime law enforcement collects or has access to public and private sources of data in the form of social media, prescription monitoring programs and email. And due to the stigma surrounding drug abuse and addiction, chronic pain patients are all but relegated to the ranks of criminals for no other reason than they require a controlled substance to manage a medical condition.
As of 2019 prescription drug monitoring programs only concern themselves with controlled substances, how long before cost cutting concerns and government efficiencies turn them into something else with the government looking over everyone’s shoulder and insurance carriers willing to pay government for access to another data source they can use for picking our pocket?
In Part 3 I’ll look at what’s at stake, more specifically how all this impacts the chronic pain community. But what is now a loss of freedoms for the chronic pain community could easily become the forerunner for all of healthcare if left unchecked.