Financial Concerns During & After Cancer Treatment

Christina Bach, MBE, MSW, LCSW, OSW-C & Tracy Lautenbach, MSW, LCSW
The Abramson Cancer Center
Ultima Vez Modificado: 13 de diciembre del 2012

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Treatment for cancer can bring about many financial concerns. Medications are expensive - even with insurance, trips to the cancer center add up in gas and parking costs, and if you aren't able to work your income is also affected. This article provides some guidance for dealing with common financial concerns. Ask to speak with a social worker at your cancer center for help with your specific situation.

Out of pocket expenses

You should start with REALLY getting to know your insurance plan. I encourage you to actually request a copy of your insurance policy from the company. They MUST supply you with this. Important things you want to know about your plan are:

  • What is my deductible (the amount I need to pay out of pocket BEFORE the insurance company starts paying for my health care needs)?
  • What are my co pays for medical appointments (with both your primary care provider and specialists) as well as for procedures like CT scans, surgery or radiation. You will also want to know what your co pay for chemotherapy treatment is.
  • What is your out of pocket maximum or "stop gap". This is the maximum amount paid by you ANNUALLY before your insurance plan pays at 100%.
  • What calendar year your plan runs on; is it calendar year (Jan-Dec), fiscal year (July-June) or some other pre-determined plan year. This will help you determine where you are in your current benefit cycle.
  • You will want to know all about your PRESCRIPTION plan as well; deductibles, co pays, out of pocket maximums and is there a yearly CAP on prescription drugs.
  • Does your insurance company offer case management or navigation services to help you through the process of obtaining medical care, authorizations or appealing denied care? How can I enroll in this service?

After you are armed with this information, you can start to assess what your expenses may be, as well as what you can afford and where you may need to access help.

The Cancer Support Community has a fantastic resource, Frankly Speaking About Cancer: Coping with the Cost of Care. This is free and available via download or can be ordered. The Association of Clinical Oncology publishes "Managing the Cost of Cancer Care" and has a podcast and video available about this topic on their website.

There are many organizations that provide financial assistance for transportation, household items/repairs, lodging and other financial supports. Talk with your local social worker about what organizations might be available in your area.

Managing the Cost of Treatment When "Underinsured"

Some patients are "underinsured", meaning their insurance pays only a portion of their bills, leaving them responsible for 10, 20 and even 30 percent of their treatment costs or hospital bills. Talk with someone in the hospital's Patient Accounting department, as many have charity programs or can offer payment plans. In most cases, you would need to show proof of income and provide some financial documents. A patient may be eligible to receive a partial or sometimes complete write off of the bill.

Low-income patients can apply at their local county assistance office or via their state's website for Medicaid/or Medical Assistance. Underinsured individuals are good candidates for the co-pay assistance programs sponsored by advocacy organizations.

There are several organizations that assist with co-pays for medications - both oral medications and those received in an infusion center. These include: Cancer Care, PAF's co-pay relief program, the Leukemia and Lymphoma Society; just to name a few. More in-depth information about co-pay assistance.

For people without prescription coverage, or for those who have exhausted their prescription coverage, many Pharmaceutical companies have Patient Assistance Programs (PAPs) that can provide medications at little or no cost. Ask your physician, nurse or pharmacist who the manufacturer of the medication is and if a PAP is available (you can often find information about PAPs on the company's website). Once you complete a PAP application, the physician will need to sign it and provide financial documents showing your income and/or assets. Once approved, the company will arrange to ship the medication to either the patient or the physician's office for pick-up. There are income guidelines for all of these programs. Needy Meds is a wonderful online resource for finding PAP programs and other resources for financial support for medical treatments.

Another great resource for low cost medications is Rx Outreach. This program offers low cost medications to qualified (financially) individuals via mail order. They cover some cancer medications as well as medications that are helpful for symptom management including depression, anxiety, seizures, nausea, and reflux.

Is there help for the cost of getting to treatment?

Many branches of the American Cancer Society offer assistance with transportation costs, including gas cards and mileage reimbursement. The ACS also has a "Road to Recovery" program that can help by providing rides to treatment by volunteer drivers if they are available. You can contact them (1 800 ACS 2345) or ask your social worker at your treatment site to make a referral.

If you are diagnosed with a blood cancer (Leukemia, Lymphoma or Myeloma), you are eligible for a $100 annual stipend from the Leukemia & Lymphoma Society, which can help offset the cost of gas. Your social worker will need to help you apply for this benefit.

Cancer Care has a program specifically for Myeloma patients called "The Door to Door Program" which reimburses for gas, parking, cab fares and public transportation.

In addition, local community agencies may have dedicated funds to assist with transportation. Your social worker can help you identify what may be available in your area and how to access assistance. Also think about calling on friends and family who express an interest in helping you - let them take turns driving you to your treatment.

Cost of Treatment Far from Home

You may need to travel far from home to receive a specific treatment, putting additional strain on your finances. There are a few resources for housing when traveling for treatment. The American Cancer Society (1-800-ACS-2354) has 31 "Hope Lodges" around the U.S., which offer a place for patients and caregivers to stay while getting treatment away from home. Joe's House is a good resource to locate lodging resources near your treatment facility. Many offer low cost or discounted rates for patients and caregivers. Host for Hospitals is a program in the Philadelphia area that connects patients with local residents who provide a "host home." Contact the social worker at the treatment facility who can assist you with resources for lodging in that area.

Cost of a wig

Some health insurance policies cover the cost of wigs; you just have to know their language—usually they are referred to as "cranial hair replacement." You should contact your insurance company first to see if you have coverage for a wig. The American Cancer Society in some areas can cover up to $75 for wigs. Many branches of the American Cancer Society also have wig "closets," with donated (new) wigs from the Pantene Beautiful Lengths foundation. Talk with your social worker to determine if any local organizations offer support for wigs. The "TLC" catalog, published by the American Cancer Society, offers a wide selection of lovely wigs, turbans and head coverings at reasonable prices.

Where can you find help with legal & disability concerns?

Applying for disability is a big decision when diagnosed with cancer and also a very personal one. Many people feel up to working throughout their treatment plan; others cannot work from the day of diagnosis.

First you should start with investigating your disability benefits, both short and long term, through your employer. Contact your Human Resources office to initiate this process. This should be considered a confidential discussion and you can ask that they not share your concerns or your health issues with your direct manager.

Secondly, think about applying for social security disability (SSDI); the caveat with SSDI is that you will not see any payments until six months AFTER social security decides you are disabled and unable to work. For example if you are diagnosed in July, but continue working until May, Social Security will count MAY as the date you were disabled and you will not receive disability payments until December. Obviously SSDI is not a short-term solution; but if you have paid into the system and meet qualifications it can offer substantial financial resources down the line.

If you haven't worked enough to be eligible for SSDI, you may be eligible for SSI (supplemental security income). This is also administered through the Social Security Administration. With SSI your date of application is your date of disability.

To apply for either SSI or SSDI, the fastest method is through the internet- You can also call 800.772.1213 to initiate your application.

If you need further legal information, contact the Cancer Legal Resource Center. They can provide legal assistance and direct you to local legal resources that may be available.

Cancer and Careers is a great resource for all things employment related, including issues encountered when working during treatment or getting back to work after an absence for treatment. They also have resources for coworkers and managers to help them support the patient and understand the laws related to cancer patient rights, discrimination, privacy and benefits.

Getting Life insurance After a Cancer Diagnosis

Accessing life insurance is not out of the question after a cancer diagnosis, but it will require some extra leg work and effort on your point. First you should check out Livestrong's nice introductory article on life insurance.

If you are still working, you can look into options through your employer for group life insurance; especially if it is near the open enrollment period. Finally, you can always contact a broker (ask people who you know!) and see what they will do to work with you. The cost may be high, but if you have family to plan for this may outweigh the cost of the plan. You may also want to consult with the Cancer Legal Resource Center if you feel you are being unfairly denied life insurance options.

Should I Have a Living Will?

Indicating your wishes for medical care is important information for both your family and your healthcare team to have. It is not REQUIRED for you to have a living will, but honestly, we all SHOULD have one.

An Advanced Directive is a legal document that allows you to state what type of medical care you wish to receive if you become unable to make such decisions or speak on your own behalf in the future. There are two basic types of Advanced Directives: a Living Will and a Health Care Proxy.

A Living Will is a document in which you give specific instructions regarding your health care with particular focus on measures that relate to prolonging your life. It can describe what medical interventions you want to have done as well as what you do not want performed and under what specific circumstances. For instance: If your heart were to stop would you want CPR performed? Would you want to be on a respirator? If the medical issue was one of progressive disease and no treatments are available to help fight the cancer, you may not wish to have extraordinary measures taken such as resuscitation to prolong your life. In a situation like this, some people want to be explicit and request to sign a DNR order, also called "do not resuscitate", to ensure that none of these measures are taken. Making these types of decisions is difficult and communicating them to your family can be emotionally challenging, but they need to be aware in order to be sure that these wishes are carried out.

A Health Care Proxy is also referred to as a medical proxy, medical power of attorney or health care surrogate. This is the person who you have authorized to make health care decisions on your behalf when you are not able to do so yourself. This person can decide which medical interventions will or won't be carried out. It is important when choosing this person that you chose someone who will make decisions based on what you want for yourself.

Make your family and friends aware of whom you have chosen as your health care proxy. Remember, you can change your proxy at any time as well as change your decisions as you need or want as well.

The following are two sites that offer low cost or free documents:

Be sure to talk with your care team about your advanced directives. Have a copy of your document placed in your medical record. Should you be admitted to the hospital, you should take a copy of your document with you. In addition, talk about your decisions with your family and the person(s) you appoint as health care proxy so they understand your wishes.

Estate Planning

It is important to think about advance care planning early on in your cancer journey. Talk to an attorney who specializes in estate planning who can help you understand the various ways to spell out what you want in a will. If you need help accessing legal assistance, check out the great information available at the Cancer Legal Resource Center.

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