American Liver Foundation

American Liver Foundation (ALF) is a national community of patients, caregivers, and medical professionals dedicated to helping people improve their liver health. Providing guidance and life-saving resources, we are a beacon for the 100 million Americans affected by liver disease. We advocate for patients and families, fund medical research, and educate the public about liver wellness and disease prevention. We bring people together through our educational programs and events, creating a network of support that lasts a lifetime. ALF is the largest organization focused on all liver diseases and the trusted voice for patients and families living with liver disease. For more information, visit liverfoundation.org or call our free national Helpline at 1-800-GO-LIVER.

Male Breast Cancer Global Alliance

The Male Breast Cancer Global Alliance brings men with breast cancer together with researchers, clinicians and oncologists around the world for the purpose of advancing research, clinical trials and treatments for men diagnosed with breast cancer. Our mission is to advocate for all men diagnosed with breast cancer to ensure they receive equal access to support and treatment; to serve as a source of support and resources for the men, their caregivers, and their families; to ensure that men are appropriately represented in research and clinical trials, and to recruit volunteer “ambassadors” to increase awareness of breast cancer in men on a global scale.

Websitehttps://mbcglobalalliance.org

Resourceshttps://mbcglobalalliance.org/tools-and-resources/#Male-Breast-Cancer-Information

Epic Experience

Epic Experience empowers adult cancer survivors and thrivers to live beyond cancer. Epic Experience provides adventure-based programs and community support for adult cancer survivors, helping them thrive beyond their diagnosis by focusing on emotional healing, peer connection, and life after treatment.

  • FB and IG: @epicexperience
  • Linkedin: Epic Experience

Know GvHD

Know GvHD is a global education and awareness initiative that provides patients and caregivers with the information, resources, and support they need to deal with graft-versus-host disease

Cancer and Careers

Cancer and Careers was founded in 2001 to support every person, in every industry and every job so they can thrive in their work and their life after a diagnosis. The organization’s services include a comprehensive website and library of publications in English and Spanish; career coaching; resume review; financial and technology grants; access to experts for one-on-one support; and educational events for people with cancer and their caregivers, healthcare providers and coworkers.

Clinical Trials and Financials

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

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.

 

BLARE

BLARE, , a tax-exempt 501(c)(3) organization, amplifies the voices of those affected by chronic illness and disease through advocacy, awareness, and scientific research. Our vision is to create a future with equitable healthcare, accessible resources, and optimal health outcomes for all.

Mindset

Mindset files your Social Security Disability Benefits (SSI/SSDI) at no upfront cost, handling the process for you or your loved one with mental, physical, or other qualifying disabilities that impact your ability to work.

To begin services with Mindset, please call (803) 284-8789. Calls can be made by you or with the support of a specialist/family member. Mindset’s dedicated intake team is available from Monday-Friday until 8pm EST to support individuals over the phone. Outside of these times, our voicemail is always available and we will give a person a call back ASAP.

If you prefers to start support with Mindset electronically, you may do so by using the below link:

Friendly reminder that you may feel free to share this information with any person who may need assistance through the social security process– person served, friends, family, caregivers, etc.

Overcoming Practice Barriers to Enhance Small Cell Lung Cancer Care Resource Guide en español

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Spanish_EPEP Advancing Practice and Enhancing SCLC Care Resource Guide

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LACNETS

Learn Advocate Connect Neuroendocrine Tumor Society (LACNETS) provides a community of support and education for neuroendocrine tumor (or neuroendocrine cancer or NET) patients and caregivers.

Learn

LACNETS’ educational programs, including webinarspatient education conferences, a video librarypodcast, and blog, provide information on diagnosis, treatment options, research and resources. LACNETS develops patient-friendly educational content that brings the latest medical information and research studies to NET patients and caregivers.

Advocate

LACNETS advocates for all people impacted by this rare disease to improve health outcomes through early diagnosis. We raise awareness about neuroendocrine and carcinoid cancers among healthcare professionals and the public.

Connect

LACNETS’ inclusive global community includes NET patients, family members, and caregivers. LACNETS makes it possible for patients to share experiences, encouragement, and hope through support groupsHealth Coaching, and NETCONNECT, a buddy program connecting a newly-diagnosed NET patient with a long-time patient.

Menopause Mandate

Menopause Mandate is a group of motivated women from all walks of life who share a common interest in perimenopause and menopause. We are devoted to creating a framework of support to achieve everyone’s ultimate goal of revolutionizing the support and advice women receive from both our healthcare system and wider society.

Menopause Mandate Resource

  1. Menopause and Breast Cancer – Interview with Dr. Corinne Menn

 

Iowa Cancer Consortium

The Iowa Cancer Consortium is Iowa’s statewide comprehensive cancer coalition. As a leader in cancer control, the Iowa Cancer Consortium offers the state’s cancer partners access to resources, expertise, and non-competitive collaboration across traditional boundaries for a bigger impact in cancer prevention, early detection, treatment and quality of life.

Black Health Matters

Black Health Matters believes that purposeful living is the foundation of health. They are dedicated to empowering Black individuals and communities to intentionally prioritize their well-being, advocate for necessary resources, and cultivate supportive environments that lead to improved health outcomes.

Their mission is to inspire meaningful change through purpose-driven health initiatives for Black Americans by bridging the gap for health equity in our community with evidence-based disease management and wellness resources.

They provide a wellness platform that connects the healthcare industries, advocacy organizations, civic organizations, religious groups and historically Black fraternities and sororities to enrich the culture and experience of the Black community.

Save Your Skin Foundation

Save Your Skin Foundation is a national patient-led not-for-profit group dedicated to the fight against non-melanoma skin cancers, melanoma and ocular melanoma through nationwide education, advocacy, and awareness initiatives. Their site offers:
  • Patient information on diagnosis and treatment options, including clinical trials
  • 1-800 telephone hotline for immediate assistance
  • Monthly Patient Fireside Chats
  • Webinars and video resources
  • Emotional and mental wellness resources
  • Personal 1-on-1 support for those touched by cancer
  • Resources for children and their caretakers
  • Information and support for those with ocular melanoma
  • The I’m Living Proof initiative, offering peer-to-peer support