Advocacy
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Want to join our efforts but not sure where to start? Make a donation, join our Foundation as a member or volunteer your time and take advantage of this incredible opportunity to lend your support. These are great ways to contribute to our causes, and every little bit goes towards supporting the mission of the Hemophilia Foundation of Maryland.
Advocacy
Help is Our Main Goal
We influence those who make a difference
We have a stated mission to advocate on behalf of our members. Advocacy happens every day and there are many ways to participate in advocacy activities throughout the year, including:
- Writing letters to your elected officials regarding proposed changes to law or regulations
- Meeting with other state decision-makers, including state departments of insurance and Medicaid agencies
- Educating health plans about the needs of the bleeding disorders community
- Educating schools and employers about the needs of the bleeding disorders community
- Advocating to your health care provider about your unique health care needs
If you are interested in learning more about advocacy and becoming a better advocate, take a few moments to explore the tools and resources below:
Maryland State Resources
- Hemophilia Federation of America - VISIT WEBSITE
- National Hemophilia Foundation - VISIT WEBSITE
- House of Representatives - VISIT WEBSITE
- U.S. Senate - VISIT WEBSITE
- U.S. Congress - VISIT WEBSITE
- Centers for Disease Control and Prevention - VISIT WEBSITE
- The Food and Drug Administration - VISIT WEBSITE
Copay Accumulator Patient Impact:
In the age of high deductibles and patient out of pocket expenditures, more and more people depend on copay assistance to afford their life-saving specialty medications. This video demonstrates how Copay accumulator adjustments affect patients requiring specialty medications with no generic alternatives. Learn more at hemophilia.org
Hemophilia Foundation of Maryland (HFM)
13 Class Court Parkville, MD 21234
Ask Ally #3
Dear Ally, I’ve been receiving telephone calls aggressively trying to sell me a Medicare Advantage policy with very low monthly premiums. During these difficult financial times, it sounds like a good idea. What do you think?
~John
Dear John: Medicare Advantage plans are a type of private insurance that boast low premiums and all-inclusive coverage – but there are caveats!
Understanding Medicare Advantage Plans: What You Need to Know
Medicare Advantage (Medicare Part C) plans offer an alternative to Original Medicare, combining the benefits of Part A and Part B, and often including Part D coverage as well. These plans are popular because they frequently have low or no additional premiums. However, it’s important to remember that even if you switch to a Medicare Advantage plan, you’ll still need to pay your Part B premium.
You may have heard mixed reviews about Medicare Advantage plans—some people are very satisfied, while others have faced significant challenges. With more than half of eligible Medicare beneficiaries enrolled in these plans, it’s crucial to understand both the advantages and potential drawbacks before making a decision.
Why This Matters for People with Bleeding Disorders
For individuals living with bleeding disorders such as hemophilia, choosing the right Medicare plan is even more critical. Bleeding disorders often require specialized care, access to specific medications, and frequent treatments that can be costly. The choice between Original Medicare, Medicare Advantage, and Medigap can significantly impact your access to necessary care and your out-of-pocket expenses.
Key Considerations with Medicare Advantage Plans
1. Provider Networks
Unlike Original Medicare, which allows you to see any doctor who accepts Medicare, Medicare Advantage plans typically have provider networks. Seeing an out-of-network doctor may result in higher costs or no coverage at all. This can be particularly problematic if you travel frequently, as out-of-state coverage is generally limited. For people with hemophilia, it is essential to ensure that your hematologist and treatment centers are within the plan’s network to avoid disruptions in care.
2. Out-of-Pocket Costs
Medicare Advantage plans do have out-of-pocket maximums, which can be reassuring in a high-cost year. However, these out-of-pocket expenses can be significantly higher than those of Medigap enrollees. Given that treatments for bleeding disorders, such as factor replacement therapy, can be extremely expensive, a Medigap plan might be a better option as it can minimize unexpected costs and provide more comprehensive coverage.
3. Prior Authorization Requirements
Many Medicare Advantage plans require prior authorization for certain services, meaning you’ll need approval before receiving care. This can lead to delays or even denials of necessary treatments. For those with bleeding disorders, timely access to treatments is crucial to prevent complications. It’s important to review the prior authorization policies of any plan you’re considering, especially as these requirements are becoming more common.
4. Plan Changes
Medicare Advantage plans can change annually in terms of pricing, networks, and benefits. While some changes may be positive, others could affect your access to care or increase your costs. For individuals with chronic conditions like hemophilia, stability in coverage is vital. It’s essential to review your plan options each year during the Medicare Open Enrollment Period (October 15 – December 7) to ensure you’re getting the best value.
5. Marketing Practices
Be cautious of aggressive marketing tactics. Medicare Advantage advertisements often highlight attractive benefits, but the fine print may reveal limitations or exclusions. Remember, $0 premiums don’t mean the plan is free—you’ll still need to pay your Part B premium and possibly other out-of-pocket costs. For those with bleeding disorders, understanding the full scope of coverage is critical to ensuring that all necessary treatments are covered without unexpected costs.
What to Consider Before Switching to a Medicare Advantage Plan
If you’re considering a switch to a Medicare Advantage plan, it’s important to do your homework:
– Understand Your Options: While Medicare Advantage replaces Original Medicare, Medigap (or Medicare Supplement) plans work alongside it to cover costs that Original Medicare doesn’t, like co-pays and deductibles. Depending on your health needs, Medigap may offer more predictable costs, which is especially beneficial for managing chronic conditions like hemophilia.
– Anticipate Future Needs: Medicare Advantage plans often have lower premiums but higher out-of-pocket costs, which could become burdensome if your health needs increase. Medigap plans, though more expensive upfront, might save you money in the long run if you require frequent or costly medical care. This is particularly important for people with bleeding disorders, who often need expensive treatments regularly.
– Plan for the Long Term: If you think you might want a Medigap plan in the future, be aware that outside of certain enrollment periods, you may be subject to medical underwriting and could be denied coverage. It’s often easier to secure Medigap coverage when you first enroll in Medicare, ensuring you have consistent access to the care you need for your bleeding disorder.
– Avoid the Worst-Case Scenario: The worst Medicare Advantage plan for you might have high premiums, a limited network, poor prescription coverage, and stringent prior authorization requirements. For someone with a bleeding disorder, these issues could lead to gaps in care or increased costs. Carefully evaluate your options to avoid these pitfalls.
In summary, I strongly advise that bleeding disorder patients steer clear of Medicare Advantage plans. The reality is that the Medicare Advantage system has been fundamentally flawed from the outset, particularly for those with conditions like hemophilia. Its model prioritizes cost-cutting at the expense of essential care, often leading to delays or denials in treatment approvals. This leaves patients without the critical care they need, resulting in unnecessary suffering. Stick with traditional Medicare—there’s truly *no* advantage in Medicare Advantage!
Ask Ally! #2
Dear Ally, Is there a special medical assistance program for patients with rare bleeding disorders such as hemophilia?
Yes, and I am so glad you asked this important question. If you or a loved one has a bleeding disorder, navigating the healthcare system can be overwhelming. One common misconception for Medicaid eligible patients is that enrolling in Medical Assistance and selecting a Managed Care Organization (MCO) is the only option available. However, Maryland offers a unique and specialized program that could better meet your needs: the Rare and Expensive Case Management (REM) program.
What is the REM Program?
The REM program is a branch of Maryland Medicaid specifically designed for eligible individuals with certain chronic, rare, and expensive medical conditions, including bleeding disorders. Assuming you qualify, unlike standard Medicaid plans that often limit your choices, REM offers a more personalized approach to healthcare, ensuring that you receive the specialized care you deserve.
Why Choose REM?
- Personalized Case Management: When you enroll in the REM program, you are assigned a dedicated case manager who will work closely with you to develop a customized plan of care. Your case manager is there to help you navigate the complex healthcare system, ensuring you have access to the right services and support.
- Freedom of Choice: One of the significant advantages of REM is the freedom to choose your specialty pharmacy. Many MCOs have contracts with specific pharmacies, limiting your options. REM empowers you to select the pharmacy that best meets your needs, ensuring you receive the medications and supplies essential for managing a bleeding disorder.
- Comprehensive Support: The REM program provides more than just medical case management. It also connects you with a range of services tailored to your condition, from specialized treatments to community resources. This holistic approach ensures that all aspects of your health and well-being are addressed.
How to Learn More
Enrolling in the REM program is a voluntary decision, but it could make a significant difference in the quality of care you receive. To learn more about how the REM program can support you or to begin the enrollment process, you can visit the REM Website or reach out to the Hemophilia Foundation of Maryland (HFM) at info@hfmoline.org.
Ask Ally! #1
Dear Ally, I am hearing a lot about PBM’s. What is a PBM?
A PBM is a Pharmacy Benefit Manager. PBMs are third-party administrators contracted by health plans, large employers, unions and government entities to manage prescription drug benefits programs. They were created in the 1960s to process claims for insurance companies. By the 1970s, PBMs were serving as fiscal intermediaries adjudicating prescription drug claims.
Today, PBMs not only adjudicate claims but also develop and manage pharmacy networks, determine drug formularies, set co-pays, and set criteria for prior authorizations and the patient’s choice of pharmacy. Originally intended to process claims on behalf of clients within a set fee structure, they are often called “invisible middleman” because they are hidden between the patient’s insurance company, who the PBM works for, and the pharmacy, who the PBM reimburses for dispensing the prescription. Currently the three largest PBMs – CVS Caremark, Express Scripts and OptumRx (a division of United Healthcare) hold nearly 80% of the prescription benefits market in the U.S.
07/23/2024 – Press Release – Comer Releases Report on PBMs’ Harmful Pricing Tactics and Role in Rising Health Care Costs
WASHINGTON—Today, House Committee on Oversight and Accountability Chairman James Comer (R-Ky.) issued a report outlining how the three largest Pharmacy Benefit Managers (PBMs) —CVS Caremark, Express Scripts, and OptumRx—have monopolized the pharmaceutical marketplace by deploying deliberate, anticompetitive pricing tactics that are raising prescription drug prices, undermining community pharmacies, and harming patients across the United States. The House Oversight Committee will hold a hearing with PBM executives today at 10:00am ET.
“Instead of prioritizing the health of Americans across the country, evidence obtained by the House Oversight Committee shows how the three largest pharmacy benefit managers colluded to line their own pockets. These self-benefitting pricing tactics pushed by PBMs have done nothing but jeopardize patient care, undermine local pharmacies, and raise prescription drug prices,” said Chairman Comer. “Since 2021, the Committee has made it a priority to expose harmful PBM practices and advance legislative solutions to ensure greater transparency and accountability in the PBM industry. Americans deserve access to affordable, life-saving medications and the Committee will continue to work in a bipartisan fashion to shine a light on PBMs and restore competition in the pharmaceutical marketplace.”
Today’s report, entitled “The Role of Pharmacy Benefit Managers in Prescription Drug Markets,” includes evidence obtained by the Committee showing how PBMs inflate prescription drug costs and interfere with patient care for their own financial benefit. The report concludes that the present role of PBMs in prescription drug markets is failing and requires Congress and states to implement legislative reforms to increase the transparency of the PBM market.
Below are key findings from the report:
The three largest PBMs have used their position as middlemen and integration with health insurers, pharmacies, providers, and recently manufacturers, to enact anticompetitive policies and protect their bottom line. The Committee found evidence that PBMs share patient information and data across their many integrated companies for the specific and anticompetitive purpose of steering patients to pharmacies a PBM owns. Furthermore, the Committee found that PBMs have sought to use their position to artificially reduce reimbursement rates for competing pharmacies.
PBMs frequently tout the savings they provide for payers and patients through negotiation, drug utilization programs, and spread pricing, even though evidence indicates that these schemes often increase costs for patients and payers. The Committee identified numerous instances where the federal government, states, and private payers have found PBMs to have utilized opaque pricing and utilization schemes to overcharge plans and payers by hundreds of millions of dollars.
The largest PBMs force drug manufacturers to pay rebates in exchange for the manufacturers’ drugs to be placed in a favorable tier on a PBM’s formulary, making it difficult for competing, lower-priced prescriptions (often generics or biosimilars) to get on formularies. The Committee has found evidence that PBMs regularly place higher cost medications in more preferable positions based on their formularies, even when there are lower-cost and equally safe and effective competing options.
As many states and the federal government weigh and implement PBM reforms, the three largest PBMs have begun creating foreign corporate entities and moving certain operations abroad to avoid transparency and proposed reforms. The Committee found that these PBMs have created group purchasing organizations (GPOs) to centralize the negotiation of rebates and fees in Switzerland and Ireland. They have also created companies in Ireland and the Cayman Islands to manufacture and market certain highly profitable generics and biosimilars. The creation of entities in locations well known for their lack of financial transparency and movement of operations that would be subject to impending regulations only heightens concerns that PBMs will do anything to avoid transparency.
The largest PBMs’ use of tools such as prior authorizations, fail first policies, and formulary manipulations have significant detrimental impacts on Americans’ health outcomes. The Committee found that the use of these tools enables PBMs to slow the market uptake of cheaper generics and biosimilars. Furthermore, the Committee found that these tools often delay and negatively impact patient care. Read More
Upcoming CareFirst Formulary Updates and Medications Added to Prior Authorization List
Carefirst has issued a Medical Preferred Drug Strategy Update effective August 1, 2024. Below is a summary of the factor agents affected.
What this means for affected patients:
- If a patient is taking a non-preferred medication, they can continue to take that medication until the current prior authorization expires.
- If a patient needs to continue medication therapy with the non-preferred medication, their doctor can submit a new prior authorization upon the expiration date of the current prior authorization.
- The new prior authorization may result in an approval for an alternative, preferred medication, which is as clinically effective and safe as the non-preferred medication.
- If their doctor believes the non-preferred medication must be continued, their doctor can submit information within the new prior authorization request to obtain a medical necessity exception.