Having a brain tumor can be overwhelming. Support services and programs can help you and your family members cope with the physical, emotional and financial implications of a brain tumor diagnosis.
- The Brain Tumor Support Group provides patients and families an opportunity to discuss all things related to brain tumor care. Meetings are held virtually via Zoom on the second Thursday of each month from noon to 1 p.m. To learn more and RSVP, contact Michaela Fitzgerald, MSW: 202-660-7519, email@example.com
- The Cancer Caregiver Support Group invites caregivers to share information, insight and encouragement. Facilitated by a social worker and oncology nurse, these meetings are held virtually via Zoom on the first and third Monday of each month from noon to 1 p.m. To learn more and register, contact Ilana Velasquez: 202-660-6320, firstname.lastname@example.org
- HopeWELL Cancer Support is for people diagnosed with a primary or metastatic brain tumor as well as their caregivers.
- Chordoma Foundation Peer Connect Program is a free, confidential peer-to-peer support program that connects anyone touched by chordoma with another person whose experiences with chordoma are similar.
- Neurofibromatosis Network brings together groups from around the country to speak as one voice on issues affecting people with neurofibromatosis.
- Pituitary Network Association offers several online self-help groups where patients can connect with each other, as well as local support groups led by a mental health professional.
- Meningioma Mommas provides support and valuable resources to all those affected by meningioma brain tumors.
- The American Brain Tumor Association's CommYOUnity Connect program pairs newly-diagnosed patients and families with mentors who have been through a similar diagnosis.
Supportive care consists of equipment and services to help patients recover and improve their comfort and quality of life. It also includes end-of-life care. Johns Hopkins will provide patients will information about supportive care that is appropriate to their situation.
Durable medical equipment is the term used for equipment such as a hospital bed, wheelchair, walker, bedside commode and shower chair. Insurance coverage varies, so it is best to contact the patient’s insurance company or treatment team for more information.
Acute rehabilitation hospitals are sometimes an option for patients who have lost some of their mobility and have the potential to regain it. Typically, in order to be admitted to an acute rehabilitation hospital, a person must:
- Be able to tolerate at least three hours of rehabilitation exercises every day
- Be able to benefit from the rehabilitation exercises
- Have insurance coverage for acute rehabilitation services.
Most, but not all, health insurance policies have some coverage for acute rehabilitation hospitalization. For more information about this option, contact the patient’s treatment team.
Sub-acute rehabilitation facilities provide rehabilitation services for people who have lost some of their mobility and ability to perform activities of daily living. Typically, in order to be admitted to a sub-acute rehabilitation facility, a person must:
- Be able to tolerate an hour of rehabilitation exercises every day
- Be able to benefit from the exercises
- Have insurance coverage for sub-acute rehabilitation services
Most often sub-acute rehabilitation facilities are housed in skilled nursing facilities (also called nursing homes).
Skilled nursing facilities, also called nursing homes, provide 24-hour care to their residents, who live in rooms at the facility. Residents may be admitted for a short stay, such as to receive sub-acute rehabilitation services. People may also be admitted for longer stays, such as when they can no longer be cared for at home. Skilled nursing facilities vary in the accommodations and services they offer.
Medicare.gov contains information about skilled nursing facilities and a list of skilled nursing facilities, as well as the results of Medicare’s periodic inspections of these facilities.
Home health care can include many types of services provided in the home, such as:
- Durable medical equipment
- Home health aide services
- Medical social services
- Occupational therapy
- Part-time skilled nursing care
- Physical therapy
- Speech-language therapy
Most health insurance policies have some coverage for home health care, but a patient must generally have a “skilled need” (i.e., something a nurse or other professional can do that the family would not be capable of doing) in order for insurance to cover the service. Check with the patient’s treatment team to determine whether these services would be appropriate.
Hospice care helps patients who are no longer pursuing curative or life-prolonging treatment for their illness but who want aggressive symptom management. The goal is to enable each patient to maintain the highest quality of life possible for the duration of his or her life. Hospice care also provides support to the patient’s family, both before and after the person’s death.
Home hospice care
Home hospice care is the highest level of home health care. It is reserved for those who need it the most, generally people who are no longer pursuing curative or life-prolonging treatment for their illness but who do want aggressive symptom management. Home hospice care is provided by a team of providers, including a nurse, social worker, certified nursing assistant, clergy, volunteers and others.
The National Hospice and Palliative Care Organization has more information about home hospice care.
Inpatient hospice care
Inpatient hospice facilities provide 24-hour care and lodging to people at the end of life. Many home hospice agencies have an inpatient facility available for people who do not wish to die at home or who require care that cannot be provided in the home. Some inpatient hospice facilities are free-standing, while others are housed in skilled nursing facilities or hospitals.
The National Hospice and Palliative Care Organization has more information about inpatient hospice care.
Private duty care is a form of in-home care that can help with meal preparation, companionship, bathing and other tasks. Health insurance usually does not pay for this type of care, but it is always a good idea to check with the patient’s insurance company to be sure.
Fees range from less than $10 to more than $20 per hour. It is important to negotiate up-front with a private duty agency for the necessary services.
Considerations for private duty care
Before contacting an agency about private duty care, consider the following:
- What does the patient need help with, e.g., bathing, driving, lifting and/or shopping?
- How many days per week and hours per day does the patient need help?
- How long will the patient need this help (one week, a month, etc.)?
- What type of insurance does the agency carry (if their employee is injured while at the patient’s home)?
- Will the patient or a caregiver have the opportunity to interview the care provider in advance?
- If the agency employee is a “no show,” will the agency send someone else?
For more information about private duty care:
- Ask the patient’s treatment team
- Ask other people which agencies they have used
- Search online for “home care” or in the phone book under “nursing”
Financial Assistance Resources
Financial assistance may be available for medications and brain tumor treatment.
Financial Aid for Medications
Many people receiving treatment for brain tumors require prescription medications, some of which can be quite expensive. While many insurance policies include a prescription benefit, not all do.
Many pharmaceutical companies have assistance programs for some of their medications. Many of the programs have very flexible income requirements, so they are often worth investigating. Each company’s program is different, so you may need to fill out a different application form for each medicine.
Learn more about the following available pharmaceutical assistance programs:
Medicaid or Medical Assistance
Medicaid, sometimes referred to as medical assistance, is state-funded health care insurance (with support from the federal government) that assists low-income people who meet eligibility criteria. Some prescription medication coverage is usually included as a benefit of Medicaid. Eligibility criteria vary by state. For more information, contact your state's health department.
Johns Hopkins Neurosurgeons answers a variety of questions about specific tumor types as well as brain tumor care a whole.
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Local Resources (Maryland, DC and Virginia)
- Hope Connections for Cancer Support (Bethesda and Landover)
- Life With Cancer (Northern Virginia)
- Smith Center for Healing and the Arts (Washington, D.C.)
- American Cancer Society
- Cancer and Careers
- Cancer Care, Inc.
- Cancer Commons
- Cancer Hope Network
- CURE: Cancer Updates, Research & Education
- National Association for Hospital Hospitality Houses
- National Cancer Institute
- National Coalition for Cancer Survivorship
- National Comprehensive Cancer Network
- National Hospice and Palliative Care Organization
- American Speech-Language Hearing Association
- Brain Injury Association
- Cushings Support and Research Foundation
- Epilepsy Foundation of America
- Food and Drug Administration
- National Aphasia Association
- National Center for Complementary and Alternative Medicine
- National Center for Learning Disabilities, Inc.
- National Institute on Deafness & Other Communication Disorders
- Patient Advocate Foundation
- The Sierra Group
- Vital Options