This section includes information about advocating for access to optimal and affordable pain care. Pain policy and regulation are often the starting point for whether or not people have difficulty accessing optimal pain care and include health care reform. Be sure to check out the section Pain Policy Advocacy if this is of interest to you!
Basics of Health Care Coverage
Currently, health care expenses are financed through one or a combination of ways, based on circumstances and eligibility. These include private health insurance, Medicare or Medicaid, state-based workers’ compensation programs or active-duty military or Veterans Health Administration.
Within each of these programs, there are an often overwhelming array of policies, regulations and procedures that dictate coverage of pain treatments. As you’re likely aware, just because a physician recommends a certain course of treatment or medication does not mean that an insurer will cover those costs. For people with pain and their caregivers, this may mean that you have to work harder to ensure access to benefits that you are entitled to through appeals or working to change policies.
By understanding how your insurance plan operates you may be in a better position to advocate for improved pain care. It is also important to be aware of cost-saving strategies that insurers use that may affect pain treatment. Caregivers and health care professionals can also advocate for improved access on behalf of themselves and their loved ones.
According to the Agency for Healthcare Quality and Research, access to health care means having “the timely use of personal health services to achieve the best health outcomes.” Attaining good access to care requires three discrete steps:iU.S. Department of Health and Human Services. Agency for Healthcare Research and Quality. National Healthcare Disparities Report. 2007. Page 114. http://www.ahcpr.gov/qual/nhdr07/nhdr07.pdf. Accessed May 29, 2012.
- Gaining entry into the health care system.
- Getting access to sites of care where patients can receive needed services.
- Finding providers who meet the needs of individual patients and with whom patients can develop a relationship based on mutual communication and trust.
Health care access is measured in several ways, including:
- Structural measures of the presence or absence of specific resources that facilitate health care, such as having health insurance or a usual source of care.
- Assessments by patients of how easily they are able to gain access to health care.
- Utilization measures of the ultimate outcome of good access to care—i.e., the successful receipt of needed services.
On March 23, 2010, President Obama signed into law the Affordable Care Act. The law puts into place comprehensive health insurance reforms with the stated goals to: hold insurance companies more accountable, lower health care costs, guarantee more health care choices, and enhance the quality of health care for all Americans. The Act will not be implemented all at once. Portions of the law have already taken effect. Other changes will be implemented through 2014 and beyond. Since becoming law, the Affordable Care Act has been subject to considerable debate. To track progress and find the latest information, visit www.health care.gov. Information about health care reform can also be found at the Kaiser Family Foundation’s website: http://healthreform.kff.org.
Ways Your Pain Treatment Benefits May be Limited
Regulations through insurance or other health coverage programs can limit access to a variety of proven, safe and effective pain therapies. In some cases, the medication that your physician prescribes may not be on a “Preferred Drug List,” and will therefore be denied coverage.
Additionally, some states have oversight committees to evaluate spending for health technology. Washington state is one example, with a group called the Health Technology Clinical Committee (HTCC), which has denied a number of pain therapies for state employees, including TENS units and spinal cord stimulators. The pain advocacy community has recently expressed concern over the lack of opportunity to make their voices heard through the decision making process.
These are just a few examples of how access to timely and appropriate pain care can be limited through “systemic barriers.” When you do hit roadblocks in your search for pain care, remember that you are your best advocate and that your voice deserves to be heard.
What is a Preferred Drug List and Prior Authorization Program?
The preferred drug list (PDL) is a list of medications pre-approved by the state for use by Medicaid patients. All drugs that are not on the PDL are classified as “non-preferred” drugs. A physician can only prescribe a non-preferred drug for a Medicaid patient after going through the prior authorization process in which the state reviews the case patient profile and determines whether or not a patient should receive the prescription.
Some states’ Pharmaceutical and Therapeutics (P&T) Committees, Prior Authorization (PA) Committees, or Drug Utilization Review (DUR) Committees review classes of drugs and make recommendations on which drugs to include on the PDL. Most states make decisions based on safety, clinical efficacy, and cost. However, some states evaluate a manufacturer’s cost as a primary factor in determining a PDL.
How Does Prior Authorization Work?
Health care providers must contact a call center to obtain permission to prescribe a drug on the non-preferred list. Only the prescribing physician, an authorized prescriber, or staff member can request the prior authorization in most states. Other states allow the pharmacist to call the call center.
If a physician prescribes a non-preferred drug without seeking permission, the pharmacist will contact the physician and give him/her the option to change the prescription to a preferred drug or make the prior authorization request.
Prior authorization (PA) approvals vary in the length of time for which they are in effect. Some states honor prior authorizations for 6 to 12 months, while other states require a monthly PA.
Federal law mandates that states approve or deny a PA within 24 hours. If authorization cannot be approved or denied, Medicaid must provide a 72-hour emergency supply of the drug at the pharmacy.
Each state has implemented slightly different criteria that outline when a physician can prescribe a drug not on the preferred drug list. In some states, this can occur only after a patient tries a number of preferred drugs in a class and those previous therapies fail (step-therapy – see below for more information).iiSoumerai, S., “Benefits and Risks of Increasing Restrictions on Access to Costly Drugs in Medicaid,” Health Affairs,Volume 23, Number 1, January/February 2004 at 135. Preferred drug lists and prior authorization approvals have the potential to:
- Prevent vulnerable patients from receiving necessary medical care
- Delay treatment
- Dissuade physicians who must obtain prior approval on a medication from prescribing that drug due to time constraints and administrative hassles
- Create higher administrative costs associated with program management and increase health care costs
Understanding How the PDL Committee Process Works
Appointed members are charged with reviewing various drug classes to recommend preferred medications in each class. Some drug classes are omitted. Consultants are generally hired to review available data and/or make recommendations and advise others who may similarly be interested in participating. Committees typically hold public hearings where the public can testify. Note that these committees make rules in advance of testimony, which may include whether testimony is written or oral.
Familiarize yourself with your State Medicaid office and procedures. The “Resources” section of this section lists website addresses by state.
Understand the procedure for adding or restricting therapeutic classes of medication. If your state has public hearings or debates on amending policies, find out how to apply to appear and voice your opinion and advise others who may be similarly interested in participating. Know the facts about your therapeutic class and outline key message points in advance. Find out whether decisions regarding medications will be based solely on cost or whether patient safety will be a consideration.
Ask questions about the proposed policies:
- Are the changes legal?
- Are the changes fair?
- Will the changes cause unnecessary hardship to patients?
Form alliances with other stakeholders for additional “clout” and ideas from adding other voices to the discussion. Additionally:
- Identify the advocacy group you represent
- Briefly cite relevant statistics related to pain management
- Mention strides in overcoming pain management barriers
- Reference effects of restricting access to medications
- Explain how a PDL for pain medications may greatly restrict access to appropriate care
- Discuss why Medicaid beneficiaries are vulnerable (poor/elderly/disabled, chronic pain, disproportionately minority)
- Explain that the variability in the effects of many medications on individual patients requires ready access to all FDA-approved medications for maximum effectiveness
- Point out the additional burdens placed on health care providers and patients by the paperwork, medication delays, and limited pharmacy access that may accompany limiting access to medications
Therapeutic Switching and Step Therapy
Cost-saving measures such as therapeutic switching and step therapy can also raise barriers to accessing good pain care. People who live with pain have special considerations when it comes to both step therapy and therapeutic switching. Step therapy can force a patient to suffer – sometimes for months – in order to receive the medication that his or her physician feels is the best treatment. This is cruel and inhumane. Therapeutic switching can also cause problems for people with pain, who have often faced years of frustration in seeking a proper diagnosis and treatment, only to be blocked from the access to care at the pharmacy.
Step therapy - Requires alternate medications, which in some cases include over-the-counter medication, be taken before the physician recommended medication is approved for reimbursement. Patients are required to fail numerous other treatment options before the insurer will grant the patient access to the treatment option that was originally prescribed by the patient’s physician, which is why this is sometimes referred to as “fail first.” This protocol is used as a cost-saving measure for the insurer. Step therapy often sets the stage for forced “off-label” use of medications that may no longer be appropriate nor provide optimal efficacy for an individual’s medical condition. In the long run, this policy can actually increase costs for the insurer because creating a delay in care can increase resistance to treatment or cause other health complications.
Therapeutic switching (or “therapeutic substitution”) - The insurer substitutes less expensive medications or alternate medications. These are not the medications prescribed by the doctor and the patient is not aware of the change until he or she arrives at the pharmacy to pick up their medication. These medications may have more side effects and be less effective for the person with pain. Pharmacists’ and doctors’ offices are put in the unfortunate predicament of confronting insurers in order to provide the patient with the treatment that they prescribed. This is different than “therapeutic interchange,” where exchanges are in accordance with previously established and medical staff-approved written guidelines or protocols, within a drug formulary system.
On a state level, the organization For Grace is actively involved with advocacy efforts surrounding California-based bill AB369, which prohibits a health plan from requiring a patient to try and fail on more than two medications before allowing the patient to have the pain medication prescribed by their doctor. This bill also allows a doctor to determine the duration of any step therapy or fail first protocol. Updates about this bill and related press materials can be found on www.forgrace.org.
Additionally, the U.S. Pain Foundation offers information and advocacy opportunities specifically surrounding step therapy in their “Advocacy” section. The organization recently led efforts in its home state of Connecticut to advocate for legislation protecting people with pain from “fail first” policies. More information can be found at www.uspainfoundation.org.
Understanding Managed Care & Appealing Denials
Purchasing a health care plan is a major decision and usually an expensive one. Consumers must become as informed as possible in order to choose a health plan that is best for themselves and their families, and also to use health care insurance to their best advantage.
The Managed Care Answer Guide from the Patient Advocate Foundation is designed to help people make decisions about choosing a health care plan. The Answer Guide is also designed to assist consumers in understanding parts of their health care plan that may be confusing once they have made health insurance choices.
Information is also included for people who are insured and find out they have cancer or another serious disease. This section helps explain what questions to ask of their current health insurance company.
You may view the Guide as printed by downloading the pdf version, or you may view it through your browser using the links below. There are three parts in the Managed Care Answer Guide:
- PART I entitled Understanding Managed Care Terminology: A Reference Manual, is a dictionary of selected health insurance and medical terms to aid those searching for a health plan and for reference after choosing a plan.
- PART II entitled A Consumer Guide to Selecting an Insurance Plan, deals with questions to be asked before choosing a plan and may help people make an informed decision. Selected criteria to use in evaluating plans are included in this section.
- PART III entitled Understanding the Provisions of Your Plan, assists people after they find out they have a serious medical condition. Certain problems prompt some common questions to ask the insurance company.
Appealing a Denial in a Payer Setting: Guide from the Patient Advocate Foundation
The Patient Advocate Foundation has also developed “Your Guide to the Appeals Process.” This easy-to-read guide features sample appeals letters, specific strategies to use when negotiating the internal and external appeals processes and specific instructions to follow when all appeals have been exhausted and it’s time for the next step. Principles used by the case managers at the Patient Advocate Foundation are reflected throughout the publication. Click here to download this guide.
Receiving Assistance for Optimal Care
Patient Assistance Programs
Patient Assistance Programs (PAPs) are usually sponsored by pharmaceutical companies to provide free or discounted medicines to low-income, uninsured and under-insured people who meet the guidelines which are different for every program. There are hundreds of pharmaceutical companies that offer PAPs for thousands of prescription drugs.
Additionally, many states, the District of Columbia, Guam, and Puerto Rico have programs that help those in need obtain their medications. Each program works differently and helps people with different types of needs. Note that some sites charge a fee or require membership for their services. Be sure to investigate the free services first!
The Partnership for Prescription Assistance (PPA) helps qualifying patients without prescription drug coverage get the medicines they need for free or nearly free. PPA offers a single point of access to more than 475 public and private programs, including nearly 200 offered by pharmaceutical companies; they have helped millions of Americans get free or reduced-cost prescription medicines. PPA:
- Helps patients in need who lack prescription coverage find ways to access prescription medicines.
- Offers a single point of access to 475 public and private patient assistance programs, including more than 180 programs offered by pharmaceutical companies. Many patients may qualify to get prescription medicines for free or nearly free.
- Provides assistance for more than 2,500 brand-name medicines, including a wide range of generics.
- Helps patients contact government programs such as Medicaid, Medicare and SCHIP.
- Assists Medicare beneficiaries with information about the Medicare Prescription Drug Benefit.
Since its launch in April 2005, the Partnership for Prescription Assistance (PPA) has helped connect nearly six million people to patient assistance programs that provide free or nearly free prescriptions. The groups behind the PPA include the largest and most influential in health care, and include the American Academy of Family Physicians, American Cancer Society, American College of Emergency Physicians, Easter Seals, National Association of Chain Drug Stores, United Way and the Urban League. For more information, visit: www.pparx.org.
Together RxAccess also helps people who do not have insurance, but are ineligible for Medicaid, secure prescription medication. To learn more about eligibility and apply for the free program, visit: www.togetherrxaccess.com.
National Organization of Rare Disorders (NORD)
Since 1987, NORD has administered Patient Assistance Programs to help patients obtain life-saving or life-sustaining medication they could not otherwise afford. Over the course of time, NORD has expanded its services to offer financial assistance with insurance premiums and patient co-pay fees as well as assistance with reasonable and appropriate diagnostic testing expenses and travel to and consultation with disease specialists that are not covered by a patient’s insurance plan. NORD also works in partnership with pharmaceutical and biotechnology companies as well as patient organizations to provide travel and lodging assistance for study participants enrolled in specific rare disease clinical trials. Click here for more information.
Health Service Delivery Systems
Community Health Centers
Community health centers that are regulated by the federal government exist in many parts of the country. These clinics are required by law to provide care to individuals without health insurance and have sliding fee scales based on an individual’s income. Many of these clinics either have pharmacies on site or have contracts with community pharmacies. In order to get medication from these clinics you must be a patient of that clinic or one of its satellite sites. For the nearest community health center contact: 888-ASK-HRSA (275-4772) or visit: ask.hrsa.gov and enter your zip code into “Find a Health Center.”
Free clinics are community clinics that provide health care for free or very little cost to uninsured individuals. There are more than 1,000 of these clinics across the country and almost all will help their patients get medication. Some have pharmacies on site, some rely on samples and pharmaceutical company patient assistance programs and some have arrangements with local pharmacies.
Public hospitals, public health departments and/or private not-for-profit hospitals in your town may be able to help you as well. Your state health department should be able to tell you how to make contact with these health care providers.
Social Service Agencies & Programs
Local social service agencies or religious groups may have emergency funds for medication purchases. You may want to contact the United Way, Salvation Army, Goodwill or a local church, synagogue or mosque for help. You can visit: www.211.org which will give you contact information for any 211 Information and Referral services available in your community. The 211 program provides individuals with local information about and referrals to human services for every day needs and in times of crisis. You may also want to visit iSafetyNet at www.iSafetynet.org, a directory of public and private community resources and services.
If you have a specific disease, there may be programs for you. Look for national organizations or their state chapters advocating for people with your condition. You can also visit the “Financial Assistance” section of the National Institutes of Health website, which has links to different organizations that may have information on financial assistance for specific chronic diseases. Click here for more information.
You may qualify for Medicaid or other similar programs that offer prescription coverage. Contact your state or county social services/welfare department. Lastly, check with your doctor or pharmacist. Physicians and pharmacists may know about where to get free or discounted medication and other health services.
HelpHOPELive is an organization that helps communities organize fundraising efforts for anyone dealing with the challenges related to a transplant or catastrophic injury, such as a spinal cord injury or amputation. They provide the consultation needed to raise funds to bridge the gap between what health insurance will pay and what is actually needed to heal, live and thrive. HelpHOPELive provides the tools to help launch and sustain a successful fundraising campaign, while offering:
- expert fundraising guidance and ongoing support
- fiscal accountability in the collection, management and disbursement of funds raised
- tax deductibility for donors
For more information, visit: www.helphopelive.org.
Resources: Access to Pain Care
The National Pharmaceutical Council (NPC) has developed “Resources for Medicare Beneficiaries: Using Your Medicare Drug Plan–What to Do if Your Medicine Isn’t Covered.”
This 12-page publication helps Medicare Part D recipients and caregivers understand some of the challenges involved in navigating the Medicare prescription drug system, such as:
- How to request coverage of medication under a particular Medicare plan
- When to appeal if a Medicare plan denies coverage of a particular medication
- How to determine who will serve as an appointed representative
- The steps to follow in the appeal process
Active Duty Military & Veterans
Since February 1998, TMA leadership has managed the TRICARE health care program for active duty members and their families, retired service members and their families, National Guard/Reserve members and their families, survivors and others entitled to Department of Defense medical care. For more information, visit www.tricare.mil.
The Veterans Administration offers comprehensive health care and other benefits for veterans and dependents of active-duty, retired or deceased members of the military. Call 1-800-827-1000 or visit www.va.gov for more information.
The Workers’ Compensation Administrators Directory lists Workers’ Compensation home page links for all 50 states and the District of Columbia. This can be found here.
Center for Consumer Information and Insurance Oversight (formerly the Office of Consumer Information and Insurance Oversight)
200 Independence Avenue, SW
Washington, DC 20201
Phone: (877) 696-6775
Centers for Medicare & Medicaid Services
7500 Security Boulevard
Baltimore, MD 21244
150 N. Radnor Chester Road
Radnor, PA 19087
Phone: (800) 642-8399
National Council on Aging & Access to Benefits Coalition
My Medicare Matters
National Organization for Rare Disorders
55 Kenosia Avenue
P.O. Box 1968
Danbury, CT 06813-1968
Phone: (800) 999-6673 (voicemail only)
Phone: (203) 744-0100
TDD: (203) 797-9590
Fax: (203) 798-2291
National Pharmaceutical Council
1894 Preston White Drive
Reston, VA 20191-5433
Phone: (703) 620-6390
Fax: (703) 476-0904
Skyline 5, Suite 810
5111 Leesburg Pike
Falls Church, VA 22041-3206
U.S. Department of Health and Human Services
Health Services and Resources Administration (HRSA)
5600 Fishers Lane
Rockville, MD 20857
Phone: (888) ASK-HRSA (888-275-4772)
U.S. Department of Veterans Affairs
810 Vermont Avenue, NW
Washington, DC 20420
Phone: (202) 225-9756
Fax: (202) 225-2034
U.S. Pain Foundation
P.O. Box 2182
Shelton, CT 06484
Phone: (800) 910-2462
Online Patient Assistance Programs
Partnership for Prescription Assistance
Phone: (888) 4PPA-NOW
Together Rx Access
State Medicaid Website Addresses
District of Columbia
Resources verified May 2012.
Checklist: Access to Pain Care
- If you are planning to file an appeal with your health insurance provider, make sure that you have read and understand your coverage program.
- Collect your medical history, records and bills.
- Enlist the help or support of a caregiver or friend to double-check your correspondence.
- Begin with the formal and appropriate appeals process.
- Be polite in all communications with insurers.
- Be persistent!
- Seek out additional support from organizations like the Patient Advocate Foundation regarding your options.
- Continue to follow up and advocate for your right to timely and appropriate pain care.
- Monitor for opportunities to testify for improved access to pain care at Medicaid hearings.
- On a broader pain advocacy level, consider sharing your struggles and triumphs with accessing pain care through other forms of advocacy, such as media outreach.