Financial Assistance for Family Care Partners

/in , /by

Resources to help you identify financial assistance for your care partner.

Medicaid

Cash and Counseling Programs:

If the person who is being cared for has a disability or chronic condition and is eligible for Medicaid, they may qualify for financial assistance that can be used to purchase necessary home and community-based services and supports. Payments will go to the family care partner or to pay for respite care.

These programs are sometimes known as cash & counseling, consumer, or self-directed programs, or other names selected by the specific state. Check with your state to see if they offer these services and any training that’s required.

List of state Self-Direction Programs: appliedselfdirection.com

Support

You may be able to receive support to provide care to a Medicaid patients. To see what is available in your state, go to:

  • Medicaid Waivers
  • Long-Term Care Insurance
  • Employer-Sponsored Care Partner Leave
  • Get Paid by Family: Working together with family to understand the true cost of care for a family member when considering the cost of a nursing home, and in-home care they may recognize your support is a much more cost-effective option. If there are funds available, ask for compensation for your efforts.

If your family agrees to pay you for your caregiving efforts, consult with an attorney to arrange a contract that details your work and pay. Good documentation is important in future reimbursement from Medicaid, health insurance, or assisted living in the future.

Veteran Services

For care partners of veterans, you may be eligible for the Veteran Directed Care Program, Veterans Pensions, and/or Aid and Attendance benefit.

These programs can potentially provide some financial and other support. Check with your home state to determine what options are available to you. They may include:

Resources:

Paid Caregiver Program Locator

Provides tools, information and creative ideas to help families and caregivers discover the means to care for their elderly loved ones.

Programs of Comprehensive Assistance for Family Caregiver

Structured Family Caregiving

Several states are approved by the Centers for Medicare and Medicaid Services to offer Structured Family Caregiving. The caregiver can be paid and receive additional support.

To Qualify: The individual needing care must be eligible for Medicaid, need 24-hour care and supervision, and require help from a caregiver with one or more daily personal care needs or Activities of Daily Living.

Check with your state Medicaid agency to see if they offer this program or a similar program.

Additional Resources

Clinical Trials and Financials

/in , /by

Under the Affordable Care Act, all insurance companies must cover the routine patient costs from an in-network provider associated with an approved clinical trial, making clinical trials much more affordable.

An approved trial is defined as a trial in any phase that is aimed at preventing, detecting, or treating cancer or another life-threatening disease. The clinical trial must be either federally funded or approved, be conducted under an FDA investigational new drug application, or be exempt from the necessity of an FDA investigational new drug application. If you want to participate in an unapproved clinical trial, your insurance may refuse to cover it. Always talk to your insurance provider before participating.

The healthcare costs associated with your medical care while participating in a clinical trial include:

  • Patient care costs: costs associated with normal treatment plans associated with your diagnosis and/or general ailments. These costs include going to the doctor, any stays in the hospital, and certain testing procedures that are covered by your insurance provider.
  • Research costs: These are costs that are directly related to the clinical trial study, such as study drugs, study-related procedures, testing performed for research purposes, and additional doctor visits. These costs are covered by the clinical trial sponsor.

Always ask for a detailed list of all the costs associated with the clinical trial from the trial sponsor. Your insurance provider may not cover follow-up tests and scans needed solely for data collection and analysis as part of routine patient costs.

NOTE: The federal requirements associated with the Affordable Care Act do not apply to grandfathered health plans. The federal law does not pre-empt any state laws that require a clinical trial policy for state-regulated plans. The federal requirements are minimums, but states may impose additional requirements.

Where to Find Clinical Trials

Here are some resources to help you find clinical trials, though many more options are available beyond this list.

Life Insurance Accessibility, Usage, and Types

/in , , , /by

Accessibility

Employer-Provided Life Insurance

Either term policy or group whole life insurance. You can enroll in these policies during your open enrollment through your employer. Employers often offer a small amount free to you as well as to spouses and eligible children.

Supplemental Life Insurance may be offered that you can sign up for at higher amounts. You are responsible for the premiums. You may also need to get medical underwriting for the supplemental amounts. This policy is often portable after your employment ends with the employer.

Private Life Insurance Policies

When you purchase from an insurance company, you are required to pay the premiums to keep the policy in force. If a term policy depends on the amount, underwriting may be required.

For permanent policies, medical underwriting is required unless it is a guaranteed issue policy that may not take into consideration your medical history. These policies are generally for lower death benefit amounts and are more costly.

Options for Usage of Cash Value or Death Benefit

Most insurance companies offer accelerated death benefit options to the insured at issue. This will allow you to access a portion of the death benefit before death if you are considered terminally ill. (Death imminent within 12 mos.).

If you have a cash value policy:

  • You may access the cash value or death benefit through withdrawal or loan.
  • Check your specific policy to confirm available options.

Considerations when dealing with cancer:

  • Obtaining new life insurance can be more difficult, if not impossible, when diagnosed.
  • If still employed with insurance options through your employer, it’s recommended to secure this coverage.

Portability options to consider:

  • Look for portability features (ability to retain coverage if employment ends), often available with supplemental life insurance.
  • Another option may be obtaining insurance through a spouse’s employer; confirm if it remains portable if they change jobs.

Accelerated Death Benefit

Many patients are not aware that most policies offer an Accelerated Death Benefit free of charge, which is included at the purchase of the policy. This allows the patient to have access to the value of the policy if the patient has a terminal illness and, depending on the policy, has a life expectancy of six months to two years. Patients with certain disabling conditions can also qualify for Accelerated Death Benefit regardless of life expectancy. This can vary between policies, but generally the benefit is 50 to 80 percent of the policy value.

Anyone who has a terminal condition should explore the Accelerated Death Benefit option. Patients with other conditions, such as ALS, those requiring artificial life support or people with organ failure who are not transplant candidates may also qualify depending on their policies and state laws.

Who can apply if it is a group policy?

The patient, their dependent spouse, or domestic partner can apply.

How can the funds be used?

Usually, there are no restrictions on how the cash can be used. Patients can pay for:

  • Medical bills
  • Medications or experimental treatment
  • Pay-off a mortgage
  • Daily living expenses
  • Making financial arrangements for their family
  • Taking a vacation

Before deciding to take the Accelerated Death Benefit, speak to the insurance company to see what limitations, if any, are attached.

Group life insurance policyholders can contact their human resources department or life insurance carrier for more information about Accelerated Death Benefit.

Types of Life Insurance and Why You Need to Know the Difference

Life insurance is a contract between the owner and the insurance company that they will pay a benefit to your beneficiaries at your death as long as you have maintained the requirements of the contract, such as paying the premium.

Many life insurance policies have built into them additional benefits that people who have become very ill may be able to utilize death benefits before death for their medical expenses. Available through an accelerated death benefit rider and is commonly free on most policies. This policy does not build cash value.

Term Insurance

This is considered a pure life policy. It is in effect for a specified period, for example: 5, 10, or even 30 years. After this period is over, the policy terminates. You may have the option to convert to a permanent policy for a period of time before termination without having any medical underwriting.

There are also Permanent, Cash Value Policies such as Whole Life, which provides a guaranteed death benefit for the entire life of the insured.

Benefits:

  • Income tax-free death benefit to beneficiaries – generally not subject to income taxes.
  • Tax-deferred growth – The cash in the policy is tax-deferred as long as funds remain in the policy.
  • Tax-efficient access to policy values via withdrawals – Under favorable First-In-First-Out will allow for cost basis to be taken free of income tax.
  • Tax-favorable access to loans for any reason – Loans that can be taken during the insured’s life against the whole life policy are not considered a taxable event, even though the policy may have a large gain in excess of the premiums paid.
  • Disability protection – The policy can continue to be funded even if you’re disabled. If you select the Waiver of Premium rider so that if you suffer a qualifying disability, your policy will continue to provide death benefit protection and have cash value growth even if you’re not still paying premiums.
  • Liability protection – In many states, the benefits of life insurance are protected from the claims of creditors.

Insurance can help you avoid probate and provide beneficiaries with privacy. Whole-life policies provide you with the ability to pay loans back from anticipated earnings. Whole-life policies can be used as collateral for loans.

The whole life policies can be either participating or non-participating, which is defined by whether or not the cash value receives dividends from the life insurance company.

Universal or Adjustable Life Policies

Provide a lot more flexibility than whole life policies. You may be able to increase the death benefit if you pass medical underwriting. The savings component usually earns a money market rate of interest. You may also be able to alter your premium payments.

Variable Life Insurance

Combines death protection with a savings account that you can invest in stocks, bonds, and money market mutual funds. The value of your policy may grow more quickly, but you also have more risk. Additionally, if your cash value underperforms, your cash value and death benefit may decrease.

Variable Universal Life Insurance

You get the features of the universal life policy and the features of a variable policy. You have the investment risk and rewards as well as the ability to adjust premiums and death benefits.

Indexed Universal Life Insurance

Offers a cash value component along with a death benefit. The cash value can earn interest through tracking an equity index selected by the insurer, and can also usually be partially allocated to a fixed-rate account.

Guaranteed Life Insurance

Pros:

  • These types of policies help provide coverage for those individuals who may have a difficult time getting life insurance due to an existing illness or health risk.
  • Guaranteed issue means you will not have to take a medical exam or complete medical questions.
  • The death benefit is usually between $2,000 and $25,000.

Cons:

  • This type of policy is available for the primary insured only.
  • May be fully functional only after a period of 2 to 3 years.
  • If the insured passes before the waiting period, the beneficiary will not receive the death benefit. A beneficiary may receive premiums paid into the policy.
  • Age requirements, usually between 50 and 80 years old. Some are available for 45 to 85.
  • Qualifications can depend on your age and location.
  • Usually more expensive than the typical term and whole life because of the greater risk.

 

First Moves When Newly Diagnosed: Getting Ahead of the Financial Game

/in , , /by

As you will find out, cancer is an expensive disease. And as a result, cancer patients are more likely to find themselves burdened with financial toxicity. We recommend you learn about your disease and the ongoing treatment, including:

  • Prescription costs
  • Lab tests and procedures
  • Doctors involved in your care
  • Their practice locations
  • Healthcare travel requirements
  • All associated costs

Contact Your Health Insurance Company

Contact your health insurance company get to know your coverage. The earlier you can do this, the better off you’ll be in the long run. Then establish a budget to help you manage your cash moving in and out.

Identify Your Healthcare Contact Team

Find out who will be your contact team at your healthcare provider’s office. Introduce yourself to those people and get their contact information. It’s better to be prepared ahead of time than to go hunting in a crisis.

Stay Organized

Use Binders to Keep Records

Get a few binders to keep notes in as well as medical bills and EOBs. Getting organized ahead of time will pay off in huge dividends later.

Gather Employer Benefit Information

If you’re still working, get a copy of your employer benefit booklet. This will provide you with the information you will need in the event you must take time off for treatment as well as other benefits that your employer offers.

Review Insurance and Financial Planning

  • Make a binder to keep track of your medical bills and evidence of benefits (EOBs) so that everything is organized.
  • Review your life insurance and understand its benefits.
  • Work with a financial advisor to help you with your budget and ongoing financial needs and goals.
  • Find an advocate who can accompany you on appointments and who can take notes on your behalf.

Questions to Ask Your Healthcare Team

/in , , /by

It’s not always easy to know what questions to ask about your care or the care your loved one is receiving. On the following pages, you’ll find lists of questions organized by topic. These questions may be helpful at different times during your treatment. We recommend printing the list and keeping extra copies for your appointments.

To stay organized, use a binder to hold your questions and add some blank notebook paper for taking notes. Try to prepare everything ahead of your appointment. If you have a lot to talk about, think about calling your doctor in advance to ask for a little extra time or see if some of your questions can be answered during a telehealth visit.

Questions to Ask About Insurance Coverage and Medical Bills

  • Who handles concerns and questions about health insurance in this office or medical center? Reach out to your insurance carrier as well.
  • Will this person help me with my health insurance provider?
  • Will this person help me figure out my medical bills and the codes on the bills to make sure they are correct? Before paying bills, compare your bill with your Evidence of Benefits (EOB) from your insurance company. DO NOT pay the bill until you are sure the bill is correct.
  • If an insurance claim is denied, who can help me file a claim? You can find a lot of information on claim appeals on your EOB. Also reach out to a third party, triagecancer.org
  • Is there anyone who can help me organize my expenses, keep track of incoming bills, and plan my budget? Consider a patient advocate. Make sure they are certified. The cost is not covered by insurance. They are independent contractors.

Questions to Ask About Appointment Costs

Appointment costs should cover everything like seeing specialists, getting a second opinion, lab tests, X-rays, and other services to make sure you get the right care.

First, make sure you can get as much coverage in-network as possible.

  • How much is my co-pay for each doctor’s visit? First call your insurance company with the name of the doctor, treatment facility, and procedure and get a copy of the approval from your insurance company. Keep notes of the call, who you spoke with, the date and time of the call, and the outcome.
  • When is this payment due? This would be listed on the bill. If the bill is being challenged, contact your provider’s billing department and let them know ahead of time.
  • If I need multiple doctor visits, is there a policy where I can pay the co-pay only once or not at all (called a waiver)?
  • Do you offer payment plans? Call the billing department or check with the financial counselor at the treatment facility. Ask about hospital charity care.
  • Will I be billed separately for laboratory tests? Are they covered under my insurance? It would be a good idea to make sure that the lab that’s being used is in-network with your insurance plan. If not, see if you can go to an in-network lab.
  • Does my insurance plan cover other doctor visits, such as second opinions, and other specialists? Check with your insurance company to see if the referral or second opinion is in-network. And if not, would it be covered?

Questions to Ask About Costs Related to General Treatment

  • Who can help me estimate the total cost of the recommended plan including office, lab, and treatment facility visits?
  • If I cannot afford this treatment plan based on being underinsured or uninsured or treatment will be out of network, can we consider other insurance coverage options or treatment options that do not cost as much?
  • Are there pre-approvals required before getting any of the recommended treatments?
  • Do you have any financial conflicts of interest in proposing this treatment plan for me?
  • What expenses does my health insurance cover if I need to be admitted to the hospital? And will that hospital and treatment providers be in-network with my insurance plan? (Again, review your insurance or talk to a case worker at the treatment facility. Keep records of the conversation).
  • What expenses does my health insurance cover if I receive treatment as an outpatient? Call your insurer and be aware that emergency room doctors probably are not in-network and will be billed separately. The more preparation you do ahead of the treatment, the better off you’re going to be.
  • Are there ways to change my treatment schedule, if necessary, to work around my job or child care? If this is going to be an issue, review ADA and/or FMLA rules.
  • Will there be a co-pay for each treatment? Again, ask and get this in writing from your insurance plan.
  • Where can I get low-cost or free counseling or support to help me cope with my diagnosis?

Questions to Ask About Costs Related to Medication

  • What is my prescription co-pay for this drug? Check with your insurance company or financial counselor at the treatment facility.
  • Is this prescription a one-time cost, or will it be an ongoing expense?
  • Is there a generic version of this medication that I can use?
  • Can we regularly review my prescriptions to see if there are less expensive options?
  • For supportive medication that manages side effects, is there an over-the-counter medicine that has the same effect as the prescribed drug? Will it be less expensive?
  • Are there programs that can help cover the cost of my drug(s) for cancer treatment or side effects?

Questions to Ask About Costs Related to Clinical Trials

  • What expenses will I have if I join a clinical trial? Contact the clinical trial manager of the specific clinical trial to see what you will be responsible for.
  • What costs are already covered?
  • How do the costs of the clinical trial compare with the costs of the standard treatment? Does one cost more than the other?
  • Can I be reimbursed for any of the costs of the clinical trial?

Questions to Ask About the Costs Related to Family and Living Expenses

  • If I have problems covering basic expenses, such as food or heat, due to the cost of my cancer treatment, are there organizations that can help me?
  • Where can I get low-cost or free child or elder care during treatment?
  • Where can I get free or low-cost personal items, such as a wig, if needed?
  • Is there an organization that can provide low-cost or free counseling or support to me and my family?

Questions to Ask About Costs Related to Employment, Legal, & Financial Issues

  • Who can I talk to if I have lost income because of my treatment? If you know ahead of time, speak to your HR department about protecting your position (ADA, FMLA).
  • If I have on-the-job difficulties related to my cancer, who can help me understand my legal rights?
  • If my caregiver has difficulties at their job because of my cancer, who can help us understand our legal rights?
  • Where can I find out if my medical and related expenses can be deducted from federal income taxes? (Refer to your tax professional).
  • Where can I get low-cost or free help with estate planning and legal issues, such as writing my will or granting a power of attorney?

Questions to Ask About Costs Related to Caregiving, At-Home Care, & Long-Term Care

  • Are there any ways to change my treatment schedule, if necessary, to work around my care partner’s job and schedule? (ADA and FMLA).
  • Can we talk about the costs of care if I do not have a family member or friend to go with me to appointments or to care for me at home?
  • Are there local organizations that can give low-cost or free home care or other services?
  • Should I plan financially for long-term medical care, such as a nursing home or hospice care?

Resources:

Asking for Financial Assistance Opportunities

/in , , /by

If you find you are uninsured or underinsured and cannot meet your financial obligation for paying medical bills or paying for prescription drugs, you may have options.

Opportunities for Assistance

  • Find out what your prescriptions are and if any biosimilars may be less expensive than brand-name drugs.
  • Know your insurance.
  • Where are you getting treatment? Are the facility and the doctor in-network for your insurance?
    • What kind of assistance can the hospital give you to pay for your treatment, such as hospital charity care, or an arranged payment program?
    • Make sure your providers are in-network, and if not, see if you can get an exception from your insurance company in writing before getting the treatment or prescription.
  • Check with the pharmaceutical company to see if they have Patient Assistance Programs for that particular drug.
  • Depending on the cancer you have, check for co-pay, co-insurance, deductible, and premium financial assistance through non-profit organizations.
  • Other financial assistance can include help for travel costs or lodging associated with medical treatment.
  • Understanding and finding financial resources for clinical trials: Refer to your insurance for coverage of clinical trials.
  • Medical supplies and vehicle modification
  • Local and State Financial Assistance: There are financial resources that may be available to you based on your financial circumstances. Please refer to these links to find the resources and the criteria for applying:

Tips When Requesting Financial Assistance

Keep a list of pharmaceutical companies and/or nonprofit organizations where you have requested financial assistance. A binder can help you keep this organized and in one place.

Keep a record of:

  • Name or organization
  • Phone number
  • Address
  • Date your assistance starts and ends
  • Amount of grant or assistance
  • What medication or insurance co-pay or deductible it covers
  • Requirements to keep assistance/grants in force

Keep a good record of who you spoke with as well as the time and date of the call.

Keep notes about the purpose of the call. If they make promises of assistance, ask that a copy of that promise be sent to you immediately either through email or a hard copy.

See More from the Financial Resource Guide

Resources:

conquercancer.org

medicare.gov

triagecancer.org

Managing Financial Stress in an Uncertain Politically Charged Environment

/in , , /by

I noticed in the last few weeks that I’ve been having a really difficult time sleeping. I experienced heart palpitations as well as short periods of minor panic attacks. This is accompanied by a bit of a lack of interest in doing things outside of my home. One evening, a friend asked me to go out and enjoy a wonderful evening of dining and music at what once was my favorite yet forgotten restaurant. I used to frequent it often before COVID but had not since.  

When we sat down, I immediately requested that we refrain from any political discussions or anything that is at the forefront of mind in the news. He agreed. The band was already playing soft jazzy music with classics and even some great renditions of more modern pieces. For example, the lead song from the movie Barbie. It was wonderful!!!!  Unfortunately, we did get off task and reverted to politics a few times out of habit but quickly recovered ourselves to go on and enjoy the evening. It wasn’t until we had finished our dinner and sat back to listen to the music that I realized how much I missed just being!  

You may find yourselves in a similar state. I would suggest you find out how much information you need and how and when to access it. Hint: not necessarily daily and not before bedtime.  Here are some things you can do now to prepare for the worst that may happen if new regulations and cuts to needed departments are put into place but still hope for the best. 

  • Try to mitigate financial stress by making sure you have cash on hand for emergencies. Usually, 6 months of monthly expenses. If you don’t already have that, start to build it up. Look at your discretionary funds and save for those rainy days. 
  • Reduce spending by reducing unnecessary spending, such as eating out and subscriptions. Consider cooking at home and reducing grocery shopping to every other day rather than buying in bulk. Reduce food waste. 
  • The cost of goods is sure to rise, and you need to be prepared.  
  • If you need maintenance done on your car, don’t wait if you don’t have to. The tariffs may make getting parts a challenge.  
  • Review your investments and make sure they have some inflation-proof financial instruments.  
  • Really take a hard look at where you are spending your money. Consider what you want vs what you need.  

Other financial worries may include ongoing clinical trials or wondering if you should even look at one, considering changes that are now in effect or may continue with funding issues. Speak to your doctor to find out what trials you qualify for and verify that they are not in jeopardy. Also, find out where they are, as some research facilities may not be conducting that trial anymore. You may have to get additional prior authorizations, and your out-of-pocket costs may be higher if you need to travel further for the treatment. Some of the additional costs may include travel, lodging, food, etc. 

Other concerns you may have may be related to how Medicaid or Medicare may be continued to be funded as there is talk that Medicare may also be of concern as well as if the Affordable Care Act (ACA) will continue subsidies for your coverage. Medicaid may be somewhat defunded, and there may be work requirements for some enrollees. These are all areas that are rumored to be targeted by the new administration. Continue to be diligent about your insurance. Make sure you have all the information you need from your healthcare provider regarding possible new treatment recommendations as well as their associated costs. Be proactive in getting to really know your healthcare insurance as well as possible changes to your plan when and if you are entitled to them.  

Another big concern of many patients is the possibility that their current prescriptions may be more difficult to access or that their insurance carrier is no longer covering prescriptions.  Review your insurance often. Make sure you don’t ignore mailings; they may be time sensitive and contain important information regarding your coverage.  

If you find your insurance is no longer covering your medications, speak to your doctor about a generic or other alternative. You can also request an appeal and have your doctor send in another prior authorization with the medication being medically necessary.  

Be aware that some Medicare Advantage plans dropped some expensive cancer medications for this new year 2025. If you find yourself in this situation, the drug manufacturer may be able to assist you. 

Unfortunately, the uncertainty surrounding us can put tremendous stress on an already stressful situation. Be kind to yourself. There are programs available to cancer patients that will assist them in getting mental counseling.  

Also, lean on the members of your local support groups. If you aren’t a member, consider joining. Reach out to organizations that offer patient support and coaching. Talk to your healthcare provider and see if they have resources at their facilities for stress reduction. Many cancer resource centers offer programs.  

Again, be diligent and mindful of your needs. Reach out to someone if you have concerns or questions. Be kind to yourself and place your health first. ALWAYS!

Sources

The Two Big Decisions That Will Drive Health Policy

Trump Endorses Budget That Would Slash Medicaid Funding 

Cancer Drug Shortage: Causes, Trends, and Implications for Clinical Trials

Understanding Clinical Trials and Associated Cost and Mitigating Financial Stress

/in , /by

Remember the law that passed 2 years ago that prevented medical debt of under $500 from hitting your credit report? That was good news for many people. That, however, doesn’t stop debt from actually happening while potentially compromising your financial future. Let’s take a look at medical debt in the United States and how it is distributed, and what can you do to mitigate the effects of medical debt.  

Clinical Trials: There are several ways to find a clinical trial. You can find them yourself or you can work with your health care team to identify a clinical trial that might be a good fit for you. Some of the resources available to help you find a clinical trial are: 

 It’s very important to talk with your healthcare provider as well as your insurance company to find out what they will pay and what labs, scans or other medical procedures will not be covered under the clinical trial. The Patient and Affordable Care Act requires most private insurance companies to cover the routine costs of your health care when you participate in a clinical trial. The routine costs include office visits, blood tests, and imaging scans that you would receive if you were getting the standard of care. Remember, your insurance company cannot drop your coverage or refuse to let you take part in the clinical trial.  Also, you need to be aware of other associated costs such as: Any research costs that are specific to the trial are not required to be paid for by your insurance company. Check with the trial administrator to see if they will cover these costs. If you are participating in a clinical trial that is out of network, your insurance company is not required to pay for the associated cost if they would not normally cover out-of- network providers. Some insurance carriers will pay at a lower rate, resulting in you having to pay more out-of-pocket. 

For other insurance providers such as government programs includingMedicare, military, and VA plans, different rules may apply. To review coverage go to: cancer.gov/about-cancer/treatment/clinical-trials/paying/federal-programs. 

If you are covered under Medicaid, Medicaid will cover your routine associated costs with the clinical trial. You cannot be denied coverage based on where the clinical trial is conducted or whether the provider is in or out of network. For more information go to: www.medicaid.gov  

  • Location of the trial, which may require additional costs for travel, parking, ground/air, lodging, food, etc. 
  • What is the time commitment and how will it impact your ability to work or care for your family if you need to take time off for an extended period of time, will you still be able to meet your financial obligations? 

What happens if your insurance company says no? 

 First, don’t give up. A large percentage of coverage requests and claims are paid on appeal.  

Again, you will need to file an appeal if your insurance company won’t pay treatment costs. You can contact the drug manufacturer or advocacy groups for assistance. Also, have your healthcare provider reach out to them as well. Your doctor can also file a letter with the appeal telling the insurance company about the benefits of the trial. They can include information about other insurances who have paid for the trial. 

If you need assistance with filing the appeal of your claim, go to: 

I have heard many times patients say, “I don’t want to take money from people who need it more than I do” when they are in situations where they really need it. Non-profit grants used to assist patients with the cost of co-pays, deductibles, insurance premiums, coinsurance, travel and many other needs already have been vetted for the patients they want to serve. If you qualify, then don’t hesitate to seek them out.  

Don’t forget to seek financial assistance from local organizations as well. A number that people seem to forget they can call 211 to inquire about local assistance programs. 

You all probably have heard or even know someone who has resorted to Go Fund Me to raise money to pay for medical bills. Go Fund me has become a standard resource for raising money to pay for medical needs. It’s unfortunate that the need is so great.   

As with many things, the people who are most harmed by the high costs of medical care are those who are already disparaged. Mainly people of color.  

Asking about your treatment options as well as the associated costs before participating in a trial, or getting treatment is key in advocating for yourself. And seeking out help understanding your insurance coverage as well as other available resources is the key to better and sustainable treatment as well as reducing financial stress.   

Sources:  

https://triagecancer.org

https://healthtree.org

https://www.medicaid.gov

https://www.patientadvocate.org 

Estate Planning: Secure Your Future, Protect Your Legacy

/in , /by

Estate Planning is probably the least understood area of financial planning. It is also possibly one of the most important components of a solid financial plan. Many people think it is only for the rich, or it can be done later when you’re older. Neither of these are true or wise! There are many benefits to estate planning that are beneficial to you when you are alive.

Your estate is everything you own, minus everything you owe. Everyone has an estate! 

Estate Planning

Estate planning is a well thought out action plan you can use to determine what happens to your assets, such as house, car, savings, businesses, and other valuables as well as your obligations, (debt) while you are alive and after you die.

It is very common for even people with a lot of financial resources to not have any plan in place when they become sick or die. You’ve heard of celebrities like Prince or James Brown that have plenty of money but failed to plan. 

Therefore it is important for everyone to make sure that all of your resources are working, and that there are no gaps or weaknesses that will surface at the moment we need to be concentrating on other things such as your health and recovery. 

A Will 

This is one of your first lines of defense in estate planning. This is a legal document that outlines how assets are distributed, who takes care of children and pets, and other wishes you may have after you die. 

An Executor

An executor is a trusted person you appoint to manage your affairs after death. You should make sure this person is competent and able to manage these affairs as they can become quite complicated. Appearing in court, getting inventory evaluations, debt information collection, valuable papers, are only some of the responsibilities that are required of the executor, 

A Power of Attorney

Not only is it important to “get your affairs in order” in the event of death, but there are many estate planning tools to help you manage your finances while living. For example: A Medical Power or a General Power of Attorney.

A durable power of attorney can help you protect property in the event an individual becomes unable to handle financial matters. It also allows that person to authorize someone else to act on his or her behalf to do things like pay everyday expenses, collect benefits, watch over investments and file taxes. The power of attorney must be drawn up by an attorney. This is important. They will keep a copy on file. I would also suggest that the person you name is someone who has your best interests in mind as they will have access to your money. This person needs to be reliable, trustworthy and responsible. Taking the time to identify this person is imperative. 

A Living Trust

A living trust (also known as a revocable trust) is a separate legal entity that protects property and investments. It’s called a living trust because it’s meant to function while a person is alive. The Trust is controlled by the person who creates it, and they can change the terms, transfer money, transfer property in and out of the trust or end the trust altogether. That individual can also name a co-trustee, such as a financial institution or a loved one to manage the assets in case he or she is unable to do so. Do not wait until you are in a crisis to set up a living trust. 

Keep mind, there are many types of Trusts. Working with an Estate Attorney as well as a Financial Planner can help determine which one is right for you. 

An Advanced Medical Directive

An advanced medical directive lets others know what medical treatment is desired, and it establishes who will make medical decisions for the individual in the event they are unable to make decisions for themselves. Depending on what’s allowed by the state in which the person lives, this document may also include a living will, a durable power of attorney or healthcare, and a do-not-resuscitate order.

Planning Ahead

Planning ahead for these things will allow everyone to know in advance what you want. It will allow expenses to be paid without interruption and can give you peace of mind as to how you want to be medically cared for in the event you cannot make those decisions for yourself.

It is possible to make sure you have your assets titled in a way that can help you manage your assets both before and after your death. If you have a lot of assets and different kinds of assets, a financial plan can be your first line of defense in pulling everything together. You should make sure the person you appoint as executor or successor executor as well as appointing a guardian for minor children are aware of your requests and have access to your documents. 

Some estates are simple and others may be more complex, especially when you have blended families. I suggest talking to an estate attorney to give you direction. Planning now can save you thousands of dollars later. 

You can prepare your funeral request in a will. As well as many other considerations.

Imagine the peace of mind you and your family will have when you have prepared in advance. 

I know it isn’t an easy topic to dwell on, but making sure you have everything in order can save a lot of headache for you later and your family at your death. The financial and emotional cost of waiting is too high! 

Sources:

American Bar Association, Real Property, Trust and Estate Law Section: https://www.americanbar.org/groups/real_property_trust_estate/ 

Trust and Will: What is Estate Planning? Estate Planning Basics Patrick Hicks, Head of Legal, Trust & Will: https://trustandwill.com/learn/what-is-estate-planning 

How Does a Disability Impact Spending in Retirement?

/in , , /by

For a variety of reasons, people who have suffered a disability before retirement age and after finding themselves having to manage their spending in retirement quite differently than if they had not had a disability. Let’s review the major reasons that a disability will affect retirement spending. 

 First, we will look at the pitfalls of a disability prior to full retirement age. 

As you know, full retirement age, according to the Social Security Department, is age 66 or over depending on your birth year. This age will allow you to qualify for Medicare and not be reliant on an employer plan. If you become permanently disabled prior to 65 Medicare qualifying age, then you may face additional cost for health insurance if you are not covered by another plan. Additionally, you may not be able to make additional savings in a retirement account, thereby reducing your retirement assets. Reduced income, as a result of leaving work early, may also mean you are tapping into retirement savings to meet everyday living or healthcare expenses. It may become even more daunting if you have a spouse who left work early to become a caregiver. All these things add up. And it not only affects your personal financial needs, but also those of your spouse and family. And don’t forget, to qualify for Medicare, prior to age 65 you have to be considered permanently disabled through the Social Security administration for 24 months (about 2 years) before qualifying for Medicare. 

Another barrier to income before full retirement age is Social Security. First you must have paid into Social Security for a period of time before you can qualify for Social Security benefits. If you do not have the required time, you will not qualify for social security at all. This, however, does not apply to the spouse of a social security beneficiary regarding spousal or survivor benefits. 

Now let’s review the effect of disability in retirement when you’re at full retirement age. At this point you automatically qualify for Medicare which gives you the assurance of health insurance. However, if you have a disability, you need to make sure that the Medicare plan you choose is going to cover your healthcare needs. Carefully review your options. Buying an additional Advantage plan or Supplemental plan with a stand-alone Prescription plan should also be included in your overall retirement expenses/costs. Patients that have a long-term illness as well as an expensive one such as cancer, need to be extremely diligent in controlling and managing the cost of their care. Careful due diligence must be maintained in understanding treatment cost, availability of care and type of care. 

Patients must also consider other healthcare needs and costs arising from the aging process. For instance, are you going to have to downsize your home and what kind of market are you going to find yourself in at that time? Long term planning is always a good practice when considering these things. Are you going to need long term care or nursing home care, and for how long? Where will the funds come from to manage these costs?  

Unlike years ago, when multigenerational families lived together and shared expenses as well as caregiving, we have long been in an age of “self-reliance” and autonomy. Which means the burden of caregiving is often difficult to acquire. A personal experience. 10 years ago, I lived in a community and subdivision of nineteen homes. Four of which housed multi-generational families, out of medical necessity. My husband and I even had plans drawn up for a large carriage house to be built on our property for his mother and mine in the event they needed to be near family for caregiving. It did not work out that way as my husband shortly after began his journey with Myeloma and I became his caregiver. And I did leave work for several years to be a caregiver for him. He retired early from his career, we spent more on healthcare as a result of his illness and our “planned retirement lives were forever changed as a result. We had planned, but even that planning fell far short of what was really needed for future healthcare needs. And the expenses and costs go far beyond the normal medical bills. 

What I have learned from my experience is to plan for the unexpected. Not only the cost of future healthcare expenses, but also, look at how to manage your financial lives if employment changes. Consider current and future housing needs. Are steps manageable, are doors and halls wide enough for wheelchairs, do you have access to bathroom and bedrooms that are easily accessible from outside? Do you need to consider moving to be near family?  

My suggestion is to look at scenarios and make achievable plans before you are in a crisis.  

It is true that hindsight is 20/20. If I could do it all over again with what I know now, planning for the future would have been considerably different. Now, as a widow, my needs have changed. Because I had to leave work for a period of time to care for my husband, I was no longer depositing into a retirement savings program. And because we spent so much of our retirement savings on his care, I am in makeup mode. I’m also considering my needs, imaging as well, as if I should find myself unexpectedly with an illness that may cause my early exit from the workforce. I have purchased Cancer insurance, reviewed, and expanded my life insurance portfolio, (not just for beneficiary needs) and purchased a home that I can age in. Though I am not yet 65, I am keeping abreast of Medicare changes so that I can make the right decisions when that time comes.  

It’s never too late to plan and make adjustments that can benefit you now and, in the future, no matter what your life status or health status is currently.  

FLT3 Inhibitors for AML Update

/in , , , , , , , /by

Introduction

Mutations in the FLT3 (fms-like tyrosine kinase 3) gene are the most common mutations seen in Acute Myeloid Leukemia (AML) patients. FLT3 mutations are seen in about 30% of AML patients. There are 2 different FLT3 mutations, FLT3-ITD (internal tandem duplication) mutation and tyrosine kinase domain mutations (TKD) mutation. Here I report some newer results of treatments with FLT3 inhibitors, that I have come across in the last several months.

There are quite a few drugs that target the FLT3 gene, including:

First generation drugs:

  • Sorafenib (Nexavar)
  • Midostaurin (Rydapt)
  • Lestaurtinib clinical development of lestaurtinib has been discontinued as it did not provide significant clinical benefit.

Second generation drugs, which tend to have fewer and less severe side effects and are more effective include:

  • Gilteritinib (Xospata)
  • Quizartinib (Vanflyta) – Only for ITD mutations.
  • Crenolanib – Not FDA approved.

FLT3 inhibitors are effective treatments for AML with a FLT3 mutation. However, there are still a number of open questions. How should FLT3 inhibitors be used, with induction chemo, with consolidation chemo and/or for maintenance after a stem cell transplant (SCT) or chemo? Can they be used as a single agent for treating patients who are not good candidates for chemotherapy? Do they work well with newer treatments, specifically with azacitidine and ventoclax regimens? There have not been a lot of comparison between the different drugs. Finally, there is the question of why all these drugs have names that are barely pronounceable!

Gilterinib

There is a new study looking at the use of gilterinib as maintenance after SCT. This was a multi-national randomized study, comparing maintenance with gIlterinib against placebo. The result was overall the patients who received gilterinib had better relapse-free survival (RFS) compared to patients who received placebo. However, this difference was not considered statically significant.  However, the trial had a pre-specified secondary objective to look at the subgroup of patients who had measurable residual disease (MRD), that is they were MRD+.

About half of the patients were MRD+ either before SCT or after (or both). In this group, the RFS survival in the patients receiving gilterinib was significantly greater than the placebo group. Unfortunately, there were more side effects in the gilterinib group. It is likely that, because of this study, patients who are FLT3+ and undergoing a transplant will get gilterinib as maintenance if they are MRD+ and not if they are MRD-. The use of gilterinib or other FLT3 inhibitors as maintenance therapy will continue to be a subject of active research.

Quizartinib

I wrote a post on quizartiinb: Quizartinib in FLT3-ITD-Positive AML that was an overview of a trial of this drug along with induction and consolidation chemo and as maintenance after chemotherapy. In July, 2023, Quizartinib was approved for treatment of FLT3-ITD AML in the United States by the FDA.

Crenolanib

Crenolanib is a second-generation FLT3 agent that works for both FLT3-ITD and FLT3-TKD mutations. In Crenolanib and Intensive Chemotherapy for Adults With Newly Diagnosed FLT3-Mutated AML, crenolanib was given with “7+3:” induction and then with consolidation chemotherapy and as maintenance therapy after consolidation chemo and after a SCT. About 2/3 of patients were younger than 60, but patients as old as 75 were included. Although this was not a randomized trial and was fairly small (44 patients), it seemed that Crenolanib added to chemotherapy and as maintenance improved survival compared to midostaurin (the first drug approved for FLT3 AML) and quizartiinb (described above).

Sorafenib

While sorafenib is an FLT3 inhibitor, this first study is on its use in AML patients even if they did have a FLT3 mutation. Previous studies had shown sorafenib improved survival when given with standard “7+3” induction for AML. This study (Sorafenib Plus Cladribine, High-Dose Cytarabine, G-CSF, and Mitoxantrone for Untreated AML) looked at sorafenib with cladribine, high-dose cytarabine, granulocyte colony–stimulating factor, and mitoxantrone (CLAG-M). The first part of the study (Phase I) tried increasing doses of sorafenib and mitoxantrone. The Phase II part of the study used the recommended phase 2 dose (RP2D) to treat more patients. When compared with historical controls who received CLAG-M without sorafenib, the patients who received the RP2D had improved survival.

Finally, there is a report on the long term follow-up of a trial looking at using sorafenib as maintenance therapy after a transplant (Sorafenib Maintenance After Allogeneic HSCT in Patients With AML With FLT3 Internal Tandem Duplications). The use of sorafenib as maintenance reduced relapse which improved survival in patients with FLT3-ITD AML. The non-relapse mortality and the incidence of chronic Graft-Versus-Host Disease (GVHD) in those who had a transplant was similar in patients who received sorafenib and those who did not. This result was sustained long-term (with a median follow-up of about 5 years).

Conclusion

The best way to use FLT3 inhibitors in patients with FLT3 mutation is still an area of active research. Newer agents promise better results – fewer side effects and better survival.

Further Reading

FLT3 Tyrosine Kinase Inhibitors for the Treatment of Fit and Unfit Patients with FLT3-Mutated AML: A Systematic Review, Int J Mol Sci. 2021 Jun; 22(11): 5873.

Molecular Mechanisms of Resistance to FLT3 Inhibitors in Acute Myeloid Leukemia: Ongoing Challenges and Future Treatments, Cells 2020, 9(11), 2493.

Gilteritinib as Posttransplant Maintenance for AML With Internal Tandem Duplication Mutation of FLT3, Practice Update (registration required, free), March 26, 2024.

Gilteritinib as Post-Transplant Maintenance for Acute Myeloid Leukemia With Internal Tandem Duplication Mutation of FLT3, Medscape, June 21, 2023.

Gilteritinib as Post-Transplant Maintenance for Acute Myeloid Leukemia With Internal Tandem Duplication Mutation of FLT3, Journal of Cinical Oncology. March 12, 2024..

Quizartinib Approval Adds New Treatment Option for AML, Including in Older Patients , National Cancer Institute, Cancer Currents Blog , August 15, 2023.

Crenolanib and Intensive Chemotherapy for Adults With Newly Diagnosed FLT3-Mutated AML, Practice Update (registration required, free), March 4, 2024.

Crenolanib and Intensive Chemotherapy in Adults With Newly Diagnosed FLT3-Mutated AML (JCO article) Journal of Clinical Oncology February 07, 2024.

Sorafenib Plus Cladribine, High-Dose Cytarabine, G-CSF, and Mitoxantrone for Untreated AML Practice Update (registration required, free), July 25, 2023.

Phase 1/2 study of sorafenib added to cladribine, high-dose cytarabine, G-CSF, and mitoxantrone in untreated AML, Blood Adv (2023) 7 (17): 4950–4961.

Sorafenib Maintenance After Allogeneic HSCT in Patients With AML With FLT3 Internal Tandem Duplications, Practice Update (registration required, free), July 25, 2023.

Sorafenib maintenance after allogeneic haemopoietic stem-cell transplantation in patients with FLT3-ITD acute myeloid leukaemia: long-term follow-up of an open-label, multicentre, randomised, phase 3 trial, The Lancet, Volume 10, ISSUE 8, e600-e611, August 2023

Olutasidenib for Relapsed or Refractory Acute Myeloid Leukemia with IDH1 Mutation

/in , , , , , , /by

Introduction 

Once again a new drug that was recently FDA approved for some Acute Myeloid Leukemia (AML) patients. Olutasidenib (brand name: Rezlidhia) was approved in December 2022 for AML patients who have relapsed or are refractory to treatment (R/R) with a mutation in the Isocitrate Dehydrogenase 1 (IDH1) gene. There is a different gene called IDH2, which can also be mutated in patients with AML, but different medications are used for IDH2 mutations. 

An existing drug, called ivosidenib (brand name: Tibsovo) was already approved for patients with AML and a mutation in IDH1. It was initially approved in July 2018 as a single agent for patients with R? AML with a IDH1 mutation. Later it was approved for use in combination with azacytidine for newly diagnosed AML patients with an IDH1 mutation. There was also a specific test (the Abbott RealTime IDH1 Assay) approved along with the initial approval of ivosidenib. This test was also approved to select patients to be treated with olutasicdenib.

Results of the Current Study 

The study used to support the approval was a non-randomized trial (all patients received olutasidenib). The study included patients with AML and ones with Myelodysplastic Syndrome (MDS) who had a mutation in the IDH1 gene. Patients were treated with olutasidenib as a single agent (monotherapy) as well as combined with azacytidine. The approval was based on the results of the 147 patients who received olutasidenib monotherapy (the results are described in detail here). 

In the study, about 35% of patients achieved a complete remission (CR) or complete remission with partial hematologic recovery (CRh) – the latter means that they appear to be in remission, but their blood counts are not normal. In addition, about one third of patients who were platelet and/or red blood transfusion dependent at the start of the trial eventually did not require transfusions for 8 or more consecutive weeks (transfusion independent). All patients experienced 1 or more adverse events (AEs) and almost all experience a serious (Grade III or IV) AE. These AEs are expected in patients with AML, particularly older patients, as most of the patients were. 

Comparison with Ivosidenib 

Now that there are 2 drugs approved for AML patients with an IDH1 mutation, the question becomes which drug should be used and in which circumstances. There have been no studies (at least ones that are published) that directly compare the drugs. According to the paper from Bload Advances on the responses to olutasidenib and ivosidenib as single agents was about the same, however the length of remission in the patients receiving olutasidenib (a median of 25.9 months) compared to ivosidenib (8.2 months0. The big caveat is that, since the comparison was not randomized, it is difficult to determine if there were differences in risks in each group. My guess is that there will not be a randomized comparison of these two groups.

It will be more interesting to look at these drugs in combination with azacytadine and also as a 3 drug combination of azacytidine and venetoclax. In addition, these drugs could be combined with existing intensive chemotherapy regimens (for instance, so-called 7+3 induction with cytarabine and daunorubicin). Likely the combinations would produce more remissions but might have significantly more side effects. 

In summary, the good news is that there is another drug that can help some patients with AML, the bad news is that the determination of the best therapy is yet more complicated. 

Further reading 

Olutasidenib: 

Ivosidenib: 

IMF Patient and Family Seminar Takeaways

/in , , , , , , , , , /by

August 2023

Los Angeles, California

Other than bouncing and swaying through Tropical Storm Hillary upon takeoff, the IMF’s Patient and Family Seminar was not only smooth, but wildly successful at imparting knowledge, fostering hope, and providing a jolly, good time. 

The International Myeloma Foundation (IMF) typically hosts two Patient and Family Seminars per year (these are in addition to Regional Community Workshops…a bit shorter in duration, but still incredibly valuable for patients and families/care partners).  I am grateful to all of the organizations that support education for the myeloma community for all myeloma patients and our families/friends/care partners. 

This 2-day seminar hosted an outstanding panel of specialists, including: 

  • Dr. Brian Durie, founder of the IMF;  
  • Dr. Robert Vescio (Cedars Sinai); 
  • Donna Catamero, ANP-BC (Mount Sinai);  
  • Yelak Biru, President and CEO of IMF; 
  • Dr. Rafat Abonour (University of Indiana School of Medicine); 
  •  Dr. Daryl Tan (Mount Elizabeth Novena Hospital); Dr. Noopur Raje (Massachusetts General Hospital); 
  • Dr. Ajai Chari (University of California, San Francisco)

There is much more than listed here, but I chose 10 specific highlights from this seminar (and will try to provide some context for each) to reduce this article’s length. 

I’ve whittled down the topic of treatment to three points that I found most interesting and hopefully useful to myeloma patients.   

Number 1:  Treatment (Extramedullary Disease-EMD)

For patients experiencing Extramedullary Disease (EMD), often considered to be a more aggressive characteristic of myeloma, and have been through multiple lines of therapy, there was discussion regarding the efficacy and use of bi-specific antibodies for treatment.  More specifically (no pun intended), the idea was floated that perhaps using TWO bi-specifics (or bi-specific with TWO targets) might provide benefit to patients with EMD.  As a reminder, bi-specifics are designed to bind an immune target (like a T-cell) with a target on a plasma cell (such as CD-38, BCMA, FcRH5, GPRC5D, etc.) to promote cell-mediated toxicity (destruction of the myeloma cell).  One of the panelists explained that the efficacy of this scenario is being examined in the RedirectTT-1 trial (which uses teclistamab [BCMA target] and talquetamab [GPRC5D target]) and showing encouraging results.  This is hopeful news for anyone experiencing EMD! 

My takeaway: If you are experiencing EMD, please work closely with your provider to monitor and treat.  If you have not seen a myeloma specialist, this would be a great time to find one (the IMF hotline is an excellent resource to assist with this 1-800-452-CURE [2873]). 

Number 2:  Treatment (Blenrep)

Regarding Belantamab Mafodotin, also known as Blenrep or belamaf, the first of its kind Antibody Drug Conjugate (ADC)…it was interesting to learn that Blenrep was not pulled from the U.S. market due to safety concerns (beyond what had been reported through trials).  Though there are toxicities associated with this therapy, of particular note, keratopathy (damage to the cornea), this is not the reason Blenrep was withdrawn from the U.S. market.  The trials did not meet statistical endpoints as defined by trial design and did not show as much benefit as expected.  For this reason (not safety), the FDA requested withdrawal from the U.S. market. 

My takeaway: I have never used Blenrep but can understand why patients would like to give it a try when other therapies have failed.  It may show some benefit with some patients.  It’s worth watching the future of Blenrep, if the manufacturer chooses to move forward for (re-)approval. 

Number 3:  Treatment (Immunotherapies)

In the last year, we’ve seen two CAR-T therapies for myeloma approved by the FDA:  Cilta-cel (Carvykti) and ide-cel (Abecma).  In August alone, the FDA approved two additional therapies for use in myeloma patients: elranatamab (Elrexfio) and talquetamab (Talvey).  The presentations on current and upcoming therapies were impressive.  From CAR-T to Antibody Drug Conjugates to CELMods and more, there is a robust pipeline of therapies for myeloma patients. 

My takeaway: Be hopeful!  The number of trials for new therapies, combinations of therapies, and therapies being employed earlier in treatment is encouraging!  (Also, my takeaway – learn how to pronounce Modakafusp before it is approved.)  

Number 4: Side Effects

A highly animated discussion regarding side effects from diarrhea to Cytokine Release Syndrome.  One of the most discussed side effects was neuropathy.  Many specialists discontinue therapy known to cause neuropathy and either switch to another therapy, or if maintenance or stable disease, keep patient off of therapy for a period of time. Interestingly, there was significant patient interaction. Many patients found gabapentin ineffective and requested other options.  One patient has utilized Scrambler therapy (he qualified by saying it has helped the pain from neuropathy but not the tingling); one patient places a bar of soap (Ivory, now that she is unable to find the pleasant-smelling Irish Spring) in her sheets; and some patients drink tonic water (with or without gin) to combat neuropathy. 

My takeaway: Talk with your provider about mitigation options for side effects.  All myeloma drugs have side effects for some people.   

Number 5: Coffee Breaks

This really was a highlight.  During our lovely coffee breaks, we enjoyed hot coffee, snacks, and excellent conversation with other patients and providers. 

My takeaway: Enjoying Evian water (and Evian sparkling water) from GLASS bottles was the Number 1 highlight of my weekend and felt luxurious.  Water always tastes better in glass vessels. 

Number 6: Technology

Data-driven technologies have the potential to save lives, improve treatment through customized treatment, and more accurately screen for diseases such as myeloma.  As the use of Artificial Intelligence, especially ChatGPT, increases, it is important to ensure that good sources are the foundation of the data you receive or request. 

My takeaway: For any search regarding myeloma, be sure to use a reputable source.  If using ChatGPT, include something along the lines of “Use only reputable sources for myeloma” in your prompts. 

Number 7: Testing (Imaging)

The most common question regarding imaging for myeloma: What is the best imaging modality for continuous monitoring of myeloma? 

My takeaway:  X-rays are out; low-dose CT is in.  Several specialists now use low-dose CT scans to screen for and monitor myeloma; however, if you are not able to have a low-dose CT, a PET-CT or MRI (whole-body) are superior to X-ray and quite adequate in monitoring myeloma.  Routine imaging is especially important for non-secretory disease and extra-medullary (disease that occurs outside of bone marrow and in soft tissue or organs).   

Number 8:  Testing (Blood)

Though we have many biomarkers to look for in the blood of patients with myeloma, it is still not up to par with bone marrow testing.  Most specialists agree that testing biomarkers in the blood (unless non-secretory) is an excellent way to monitor controlled disease.  Some specialists request a bone marrow biopsy annually, while others on this panel follow blood work and request biopsy when indicated by changing values.  Exciting news on the mass spectrometry front!  Known as “mass-spec testing,” this is a very sensitive test (more sensitive than the SPEP) to measure myeloma proteins in the blood will likely be an option for myeloma patients, once guidelines are established for its use and equipment and training is “rolled out” to other facilities. It is currently in use at Mayo Clinics; this panel is hopeful to see FDA approval and potential wide-spread access in the next year (maybe by mid-2024?). 

My takeaway: Ask your oncologist if mass-spec testing is available for you, if you are interested in one more data point regarding your disease.  It will not replace bone marrow biopsy soon but will serve as a deeply sensitive test for disease monitoring. 

Number 9: My Number One Takeaway

Myeloma is a complex disease with complex and numerous treatment options.  Please find a specialist.  Even if it’s for one consult.   

Number 10: Overall

This seminar was excellent!  Excellent presenters, excellent patients, excellent questions, excellent conversation, excellent food, excellent content. 

My takeaway:  Seminars such as this (and those offered by other organizations like Healthtree, MMRF, and LLS) provide a wonderful opportunity to learn the latest information regarding myeloma AND a warm, welcoming environment to promote networking among patients and families.  If you are interested and have a chance to attend, I highly recommend it.  I also recommend finding a support group (in-person or online).  Networking and friendships from support groups are invaluable. 

One final bonus to mention…the IMF really gets myeloma.  A table of blankets and pillows was stacked high for anyone needing a little extra comfort/support…myself included.  A soft pillow behind by hole-y spine and an ice-cold sparkling water from a glass bottle…I’m already looking forward to the next myeloma vacation.  Um…I mean, seminar.   

-Lisa 

This article is solely based off patient experience and is not intended to be a substitute for professional medical advice. Please consult with your physician or qualified health care provider with any questions you may have regarding your medical condition. 

Changes to Medicare Part D in 2024 and 2025

/in , , /by

The Inflation Reduction Act of 2022 put into play some major changes to Medicare Part D enrollees. The purpose of the changes was to reduce out-of-pocket costs for prescription drugs.

I always recommend Medicare enrollees review their current plan and current and anticipated medications to make sure they have the best plan for optimal coverage. Always remember that there is a separate co-pay, deductible, premium, and max out-of-pocket from your Medicare health insurance plan. 

Let’s review these upcoming changes to the current plan. In 2023, there are 4 distinct Phases to Medicare Part D, where the cost-sharing drug costs paid by Part D enrollees, Part D plans, drug manufacturers, and Medicare varies. 

Comparisons 2023-2025: 

  1. Deductible phase

    Enrollees pay 100% of their drug costs, up to $505. Note: not all Part D plans charge a deductible, however in the stand-alone Part D plans, many enrolled are responsible for a standard deductible.

  2. Initial Coverage phase

    Part D enrollees pay 25% of total drug costs and Part D plans pay 75%, up to total costs of $4660. Most Part D plans charge a mix of copayments and coinsurance rather than a standard 25% coinsurance rate.

    2025 changes     – Drug manufacturers will be required to provide a 10% discount on brand-name drugs. This will replace the 70% price discount in the coverage gap phase under the current benefit design. Part D plans will pay 60% of brand-name drug costs.

  3. Coverage Gap phase

    Part D enrollees pay 25% of the total drug costs for both brand-name and generic drugs. Part D plans pay the remainder 75% of generic drug costs and 5% of brand costs.  Drug manufacturers provide 70% price discounts on brands. Note there is no manufacturer price discount on any generic drug.

    2025 changes include    : A new $2,000 out-of-pocket cap. (This cap does not apply to out-of-pocket spending on Part B drugs), elimination of the coverage gap phase, a higher share of drug costs paid by Part D plans in the catastrophic phase, along with a new manufacturer price discount and reduced liability for Medicare in this phase, and changes to plan costs and the manufacturer price discount in the initial coverage phase.

  4. Catastrophic phase

    Medicare pays 80% of total drug cost, part D plans pay 15% and Part D enrollees pay 5%. Part D enrollees qualify for catastrophic coverage when the amount that they pay out of pocket plus the value of the manufacturer discount on the price of brand-name drugs in the coverage gap phase exceeds a certain threshold amount set at $7,400,  of which enrollees pay $3100 out of pocket before reaching catastrophic phase. This is based on the cost of brand-name drugs only.

2024 Changes – 5% coinsurance requirement for Part D enrollees will be eliminated and Part D plan will pay 20% of total drug costs instead of 15%. For Part D Enrollees without low-income subsidies, once drug spending is high enough to qualify for catastrophic coverage, they will no longer be required to pay 5% of their drug costs, meaning out-of-pocket is capped. 

2024 Changes – the catastrophic threshold is capped at $8,000. This includes what Part D enrollees spend out of pocket plus the value of the manufacturer price discount on brands in the coverage gap phase. Meaning, in 2024 Part D enrollees who take only brand-named drugs will have spent about $3300.00 out of pocket and then will have no more additional cost for these drugs.

2025 Changes – Medicare’s share of total cost in the catastrophic phase (reinsurance, ) will decrease from 80% to 20% for brand-name drugs and from 80% to 40% for generics. Medicare Part D plans’ share of the costs will increase from 15% to 60% for both brands and generics above the cap, and drug manufacturers will be required to provide a 20% price discount on brand-name drugs. 

This is very important for those who are taking high-cost cancer drugs such as Revlimid, Pomalyst, Imbruvia, Jakafi, and Ibrance. These drugs have the highest per capita Part D expenditures in 2021. The annual out-of-pocket costs for these cancer drugs range from $11,000 to almost $15,000, and in the catastrophic phase, out-of-pocket costs per drug in 2021 ranged from around $8,000 to nearly $12,000. So eliminating the 5% coinsurance requirement in the catastrophic phase in 2024 means that Part D enrollees without low-income subsidies who use these and/or other high-cost cancer drugs covered by Part D will realize thousands of dollars in savings. You can see the savings especially if you use more than one of these medications.

Additional Changes to Medicare Part D

2024 Changes

  • People with Medicare who have incomes up to 150% of federal poverty level and resources at or below the limits for partial low-income subsidy benefits will be eligible for full benefits under Part D Low-Income Subsidy (LIS) Program. The partial LIS benefit currently in place for individuals with incomes between 135% and 150% of Federal Poverty Levels.will be eliminated.
  • The calculation of the base benficiary premium will be adjusted, as needed, to limit the increases in the base premium to no more than 6% from prior year values. Note: Premiums for individual Part D premiums and annual plan-level premium increases will continue to vary.

2025 Changes

  • Part D enrollees will have the option of spreading out their out of pocket costs over the year rather than face high out of pocket costs in any given month. 

So how do you decide how to choose Medicare Drug coverage?

Take an inventory of your needs, now and in the near future. Look at your priorities. Here are a few things to consider when planning:

  1. What are the drugs you are taking or anticipate taking? Make sure the drug plan you are considering are on that plans formulary. Then, compare the costs.
  2. If you need protection forn high prescription costs, as is very common for a lot of cancer drugs, look for drug plans offering coverage in the coverage gap, if applicable, and check with these plans to make sure they cover your drugs in the gap.
  3. If you need to make sure your drug costs share is balanced throughout the year, refer to drug plans with no or low deductibles, or with additional coverage in the coverage gap.
  4. If you take a lot of generic medications, look at a Medicare drug plan with tiers that charge you nothing or low copayments for generics.
  5. If you don’t have many drug cost now but want to make sure you have coverage “just in case” to avoid future penalties and for peace of mind, consider Medicare drug plans with low monthly premiums. If you need prescription drugs in the future, all plans must cover most drugs used by Medicare enrollees.
  6. If you prefer the extra benefits and lower cost available by getting your healthcare and prescription drug coverage from one plan, and, you don’t mind possible restrictions on the doctors, hospitals and other heathcare providers you can use, then consider a Medicare Advantage Plan which has this all bundled into one. Again if you have multiple specialist and complex healthcare needs consider your options carefully.

Again, I encourage everyone to review their options and make the beat choice for you and your family. And most importantly, review yearly.  Don’t just look at the cost of premiums when making a decision. When you have expensive medications especially for cancer, it’s important that you stay on treatment. Knowing your options ahead of time and planing for associated cost will help prevent you from beoming financially stressed. Talk with your healthcare provider’s. Ask about generic medication options. Work with the social workers or patient advocates at your healthcare center to search out co-pay, deductible, premium assistance programs available from pharma as well as non-profits that can help you meet your financial obligations for out of pocket expenses.

Resources:

Changes to Medicare Part D in 2024 and 2025 Under the Inflation Reduction Act and How Enrollees Will Benefit

Medicare.gov

Omidubicel (Expanded Cord Blood) for use in Allogeneic Transplant

/0 Comments/in , , /by

Introduction

Umbilical Cord Blood (UCB) has been used as a source of stem cells in allogeneic (donor) transplants since the late 1980s. When doing a transplant using bone marrow (BM) or peripheral blood (PB), it is necessary to have a close Human Leukocyte Antigen (HL) type match to reduce the chance of the transplant being rejected and the risk of Graft-Versus-Host Disease (GVHD). Since UCB contains more naïve cells, it does not need to match nearly as well to be used as a source of stem cells in a transplant. This is important for people who do not have good unrelated donor matches in the registries, in particular minorities who tend to be underrepresented in the registries and people of mixed race.

Since a single UCB unit contains significantly fewer stem cells than a PB or BM graft, it takes longer for a patient’s white blood (neutrophil) count and platelet count to recover when getting a UCB transplant. This is a fundamental problem of using UCB for transplants. This means that patients are at risk of infections for a longer time. There have been a number of attempts to expand the number of cells in a cord blood unit, dating back at least 20 years, but none have managed to be approved by the U.S. Food and Drug Administration (FDA).

FDA Approval

The FDA approved omidubicel to reduce time to neutrophil recovery in April, 2023. This was based on a Phase 3 randomized study (reported in Omidubicel vs standard myeloablative umbilical cord blood transplantation: results of a phase 3 randomized study) that compared the outcome of patients who received omidubicel versus those who underwent conventional cord blood transplants.

Comparison of Omidubicel and standard Cord Blood transplants

The trial enrolled 125 patients who were randomly assigned to receive omidubicel (62 patients) or a standard UCB transplant (63). Patients in the standard transplant arm received a double cord transplant if the initial CB unit was not well matched or contained a smaller number of cells. 67% of those patients received a double cord transplant, 33% a single cord transplant. Three alternative myeloablative conditioning regimens were allowed and different regimens to prevent GVHD.

The time to white blood cell recovery (a neutrophils count of at least 500) and platelet recovery (a count of at least 20) was much faster in patients who received omidubicel. Patients who received omidubicel had neutrophil recovery a median of 10 days faster than patients who received a standard UCB. Platelet recovery was a median of 13 days faster for those receiving omidubicel. Patients who received omidubicel spent a median of 11 fewer days in the hospital in the first 100 days post-transplant and experienced fewer serious infections..

There are a couple of drawbacks to omidubicel. About 10% of the CB units had manufacturing or production failure. In addition, it takes about 21 days to manufacture omidubicel. These issues resulted 14% of patients not being able to receive the therapy.

Discussion

Omidubicel is a significant advance in the use of cord blood for transplants. There was a big reduction in hospital stays and infections. There may be a survival benefit with omidubicel., the study was too small to determine if there was a statistically significant increase in survival, although there seemed to be a trend toward better survival. The authors of the paper in Blood , state: “The results suggest that omidubicel may be considered as a new standard of care for adult patients eligible for UCBT”. I think this probably is an understatement and centers that use cord blood in adults and older children will rapidly start using omidubicel. No doubt there will be a high price for omidubicel, but this is likely to be balanced out by reduced number of days in the hospital.

A major question that remains unanswered is how omidubicel will now compare to transplants using an unrelated donor or a half-matched family member (haploidentical). My guess is that most centers that do not do cord blood transplants in adults will continue to use unrelated or haploidentical donors. Probably, in a few years there will be a comparison done, at least using data from transplant registries.

I asked Karen Ballen, M.D. Chief, Hematology/Oncology, University of Virginia Cancer Center for comment on omidubicel (I would also like to thank her for graciously providing comments on this article):

Omidubicel is the first product approved by the FDA for expansion of a stem cell transplant graft, in this case cord blood. The randomized clinical trial showed an advantage in neutrophil and platelet engraftment and days in the hospital. There was no survival benefit, which could potentially limit use. The cost of the product is unknown. Another drawback is the 2.5 to 3 weeks needed to manufacture. Nonetheless, this represents a major advance in the cell therapy field.

Further Reading