Make Your Voice Heard
The Michigan Lupus Foundation is advocating to improve the patient experience with health insurance, medications and disability rights in the state of Michigan. We are actively engaged in advocacy efforts at both the federal and state levels by joining national and state coalitions to help improve the quality of life for those living with lupus. We encourage patients to share their own stories with their legislators to make their voices heard. Learn how you can help impact current legislation on the topics listed below that are affecting those with lupus.
Copay Accumulator Policies (H.B. 4719)
For individuals living with chronic conditions, like lupus and other autoimmune diseases, the high cost of drugs has a direct impact on patient access. With expensive medications like Benlysta and Saphnelo, which can cost around $10,000 per month, copay assistance programs from manufacturers save patients thousands of dollars so they can afford their life-saving medication. However, a new insurance trend is impacting copay assistance for patients. Under these policies, generally called “accumulator adjustment programs,” copay assistance from manufacturers will no longer be applied towards patients’ deductibles or out-of-pocket expenses. When facing high out-of-pocket costs, patients do not use their medications appropriately, skipping doses in order to save money or abandoning treatment all together. For many of these specialty medications, there is no generic or less expensive alternative.
Patients are often unaware they are enrolled in one of these programs until they go to the pharmacy and realize they must pay the full cost of the medication, which can lead them to abandon or delay their prescription. AARP estimates that 28% of US patients 19 to 64 years old skip medications because of their costs. In Michigan, however, the problem is more severe, 32% of this population skips medications due to cost.
Copay Accumulator Adjustments: What are they and how they can affect you? Here is a video by the National Bleeding Disorders Foundation.
The State of Michigan House of Representatives introduced a copay accumulator bill (H.B. 4719), but it has since stalled on the floor. If you have experienced copay accumulator tactics with Benlysta, Saphnelo or other specialty medications, please contact us here to learn how you can help.
Step-Therapy Prescription Practices (H.B. 5339)
Step therapy is a process by which insurers (public or private) require patients to take one or more alternative medications before they can access the original more expensive medicine prescribed by their provider. The protocol used by health insurance companies requires patients to "try and fail" on one or more lower cost medications before they will provide coverage for the medication originally prescribed. This policy is also known as “fail first” because it requires a patient to fail on an insurer-preferred, and more affordable, drug first. These decisions are based solely on cost and not on what’s best for the patient (as defined by the Crohn’s & Colitis Foundation).
When used inappropriately, step therapy protocols can delay necessary treatment and lead to adverse reactions that ultimately increase rather than lower health care costs. For patients living with chronic conditions like lupus, the inappropriate use of step therapy is particularly concerning as it can take years to find a diagnosis and a treatment that works.
The use of step therapy has increased to the level of needing state and federal laws to ensure these requirements do not interfere with appropriate care for patients.
The State of Michigan house of representatives introduced a step therapy bill (H.B. 5339), but like the copay accumulator legislation, it has since stalled on the floor. If you have experienced step therapy requirements with your prescribed medications, please contact us here to learn how you can help.
Medicare Multi-Cancer Early Detection Screening Coverage Act (H.R. 2407)
Lupus can increase your risk of lymphoma and some other types of cancer by as much as four to seven times. Although more research is needed to understand the exact relationship between lupus and cancer, both conditions are related to problems with your immune system. Researchers think it may be partly due to some lupus medications that suppress your body’s immune response. A weak immune system can allow cancer to grow or spread. Lupus also causes chronic inflammation, which is linked to a higher risk of some cancers and other chronic conditions. A 2018 review of 24 studies found lupus can increase the risk of as many as 16 other types of cancer, but it’s not linked to a higher risk of many common cancers, such as breast, uterine, pancreatic or brain cancer.
Approximately 1,700 Americans die from cancer every single day. That adds up to more than 600,000 of our friends, neighbors and loved ones losing their battle each year. Despite the increased risk of cancer in people with lupus, studies show that lupus patients are actually equally or even less likely than the general population to undergo regular cancer screenings. It is well known that early detection of cancer saves lives, lowers treatment costs and increases quality of life for patients and their families. The five-year survival rate is almost 90% when cancer is found in its early stages.
Currently, routine cancer screenings are only covered by insurers for five types of cancer — breast, cervical, colorectal, prostate and lung cancer, only in high-risk individuals for lung. That leaves the vast majority of cancers without available screening tests and those cases account for nearly three of every four cancer deaths in the United States each year. We must expand our ability to screen for and detect cancers in the early stage.
The Multi-Cancer Early Detection Screening Coverage Act modernizes the Medicare program and creates a benefit category for MCED tests, which allows the Centers for Medicare and Medicaid Services (CMS) to initiate an evidenced-based coverage process for multi-cancer tests upon FDA approval. The legislation was drafted based on the colorectal and prostate cancer screening legislation from the Balanced Budget Act of 1997 that established a covered benefit for colorectal and prostate cancer screening tests and granted the Secretary of the Department of Health and Human Services (HHS) the authority to cover new screening technologies for these cancers.
The Michigan Lupus Foundation supports the Multi-Cancer Early Detection Screening Coverage Act (H.R. 2407) to protect the lives of lupus patients at risk of developing cancer. Learn more about how you can help and get in contact with your state representatives to support this bill.
Kidney PATIENT Act (H.R. 5074)
Lupus nephritis is a kidney disease that occurs when lupus affects the kidneys. It is caused by the body's immune system attacking the kidneys, which can lead to inflammation, swelling and irritation. Kidney damage is one of the more common health problems caused by lupus. In adults who have lupus, as many as 5 out of 10 will have kidney disease. In children who have lupus, 8 of 10 will have kidney disease. Kidney disease caused by lupus may get worse over time and lead to kidney failure. If your kidneys fail, you will need dialysis or a kidney transplant to maintain your health.
Oral phosphate-binding medications are necessary to treat hyperphosphatemia, a condition that occurs in nearly all individuals who receive dialysis treatments. If not treated, hyperphosphatemia can increase mortality, vascular calcification and cardiovascular events. Currently, patients can access these drugs at their local pharmacy, but as of January 1, 2025, a new policy change from the Centers for Medicare & Medicaid Services (CMS) will instead require dialysis providers to distribute these medications. This policy may negatively impact patient access to care, as many dialysis providers lack sufficient infrastructure needed to dispense and administer these drugs.
A bill in the U.S. House of Representatives, Kidney PATIENT Act (H.R. 5074), would slow efforts by commercial health plans from moving patients with end-stage kidney disease to Medicare. The bill would ensure patients have access to the medications they and their doctors have determined work best for them. In addition, the bill would save money for taxpayers because it would delay an increase in the ESRD base rate that determines the bundled payment that would occur when adding oral-only drugs to the bundle. This legislation is critical for Americans living with end-stage renal disease and who rely on dialysis. Patients deserve to know their benefits will be in place when they need them. This legislation will improve both patient care and patient outcomes.
Please ask your member of Congress to support the Kidney PATIENT Act.
The Michigan Lupus Foundation supports the Kidney PATIENT Act (H.B. 5074) to protect the lives of lupus patients with lupus nephritis. Learn more about how you can help and get in contact with your state representatives to support this bill.
Advocacy Resources
The Lupus and Allied Diseases Association, Inc. (LADA) is an all-volunteer national patient advocacy organization dedicated to enhancing quality of life by enlightening and empowering individuals impacted by lupus and allied diseases and other conditions of unmet need to become proactive in their medical care. As a passion-driven charity led by people with lupus and their loved ones, we work to ensure that the patient stakeholder is included as an equal participant in the healthcare, regulatory and public policy arenas and across the research continuum. It is our goal to improve access to care and quality of life by fostering collaboration among stakeholders, promoting unity in the community and wielding the patient voice as a catalyst to advance innovative advocacy, education, awareness and biomedical research initiatives. Learn more about LADA’s latest Advocacy in Action.
The AIDS Institute Unchecked: Copay Accumulator Adjustment Policies in 2024. Report findings by state.
Stay in touch with your State of Michigan House and Senate Representatives to support lupus awareness and provide the patient voice for important legislation.
Stay in touch with your United States House and Senate Representatives to support lupus awareness and provide the patient voice for important legislation.