Cancer Survivor: The Transition from Oncology to Primary Care

I have a genetic autoimmune disorder known as mixed connective tissue disease  and I was very lucky to have had some great doctors working with me when I went through leiomyosarcoma. My father was equally lucky to have some top-notch physicians and oncologists during his cancer war also. After it was all over, however, I no longer needed  to see my oncologist on a regular basis, and there was no recommended “survivorship” plan or support group to help me figure out what to do next. 

Like most cancer survivors I went back to my regular doctor for follow-ups  and treatment of my autoimmune disease, but I felt like something was missing. Although I believe in my heart I have one of the best doctor s ever, she simply wasn’t able to support me emotionally or to help me with the long-term side effects of  cancer treatment effectively in a way that felt useful to me and I often felt like an experiment gone wrong.  

It is not unusual, after cancer treatments are complete, for most patients to be transferred back from their oncologists back to their primary care physicians. Most cancer survivors will agree that their primary care physicians are not always prepared or equipped for dealing with them as cancer survivors simply because that is not part of their medical training.

Study Shows Doctors Need More Training in Survivorship

A recent study found that many doctors, particularly primary care doctors, don’t feel very confident in their ability to take care of cancer survivors. Oncologists, too, believe that primary care physicians aren’t adequately educated for the task. Regular doctors, for example, tend to “over-test” for cancer recurrence because they’re not sure how much is too much. They may also not be fully prepared to deal with post-treatment concerns like lasting side effects,  psychological support, and managing other related diseases and conditions.

“More training and education of cancer survivorship is critical for the primary care physician and the oncologist,” says Julia Rowland, Ph.D., director of the Office of Cancer Survivorship and the National Cancer Institute.

Suggestions for a Smooth Transition

What can you do to help make the transition from your cancer-care team to your regular doctor go more smoothly? The authors of the study suggest the following:

• Meet with your oncologist after treatments are over and ask for a summary of the care you received, plus an outline of recommended follow-up care that you can then take to your regular doctor.
• Ask about what aspects of your care the oncologist will take care of, and what aspects your regular doctor should take care of.

In addition, here are some other things you can do—from my experience!

• If something feels “off,” ask about it. You know your body better than anyone.
• Ask your oncologist or doctor about important post-treatment care like support groups, counseling, massage, acupuncture, and other types of therapies. He or she may know about reputable programs that offer services for free or for reduced rates to cancer survivors.
• If your regular doctor isn’t communicating well with you, consider transferring to one who will.
• Check with a dietician or nutritionist to get on top of your post-treatment diet.
• Get into a regular exercise program—one you enjoy doing.
• Take responsibility for your own care. Most of us feel depressed, overwhelmed and confused after treatments are over. Get the help and the support you need to make it through this difficult time by attending a support group, seeing a life coach who specializes in cancer survivorship, and by surrounding yourself with other survivors who understand.

Did you find it difficult to talk to your regular doctor after cancer treatments? Please share your story.

Source: Georgetown University Medical Center. “Doctors differ in how best to care for America’s 12 million cancer survivors.” ScienceDaily, 25 Jul. 2011. Web. 26 Sep. 2011.

Finding Reliable Health Information on the Web

The explosion of information on the internet has certainly benefited people with cancer, but has also added a good dose of confusion and new pressure. With thousands of websites offering cancer information, knowing which ones to trust can be difficult.

If you don't have a computer at home, most public libraries have computers with free internet access for your use. If you're not familiar with how to use computers or the internet, ask a friend, family member or staff person at the library to help you.

Where to begin ?

• A good place to begin is always with your health care team. Your doctor, nurse or social worker can tell you about websites or books related to your cancer type that will provide credible information. 

• Government institutions, like the National Cancer Institute (http://www.cancer.gov/), provide trustworthy, current information on cancer staging, new treatments, side effects management and more.

• Nonprofit organizations can refer you to helpful websites such as the following: 

1. CancerCare 

   http://www.cancercare.org/

   
   
2. Association of Cancer Online Resources 

   http://www.acor.org/

   
   
3. American Society of Clinical Oncology http://www.peoplelivingwithcancer.org/

   
   
4. University of Pennsylvania Oncology 

   http://www.oncolink.org/

Can I trust this website ?

What is the purpose of the website - educational or commercial ?

Educational websites, which are generally sponsored by nonprofit organizations, provide information about many different treatment options. Commercial sites, like those sponsored by pharmaceutical companies, will provide excellent information about their own products (drugs) and/or research procedures or clinical trials but are not a good place to learn about the full range of treatment options.

What is the website's or blog reputation?

Chances are, if you or your doctor or other professionals you trust have heard of the website, it's reliable.

What is the source of the information ?

Generally, nationally known cancer centers, medical schools, large nonprofit organizations, and government agencies provide the highest quality information but a number or new comers such as SJCCF are reliable information contenders with the best of them.

Is the information relevant to you ?

A good website provides information that speaks to your needs.

Can you identify the authors of the material?

If they are not experts in the field or if they are anonymous, their information could be misleading or inaccurate.

Are the links relevant and appropriate for the site?

Websites that refer you to commercial sources of information should be rejected because they may not be providing you with all the information you need to make an educated well informed decision.

Remember the internet is not a substitute for individual medical care. Use credible information you find on these sites and this blog to help you communicate more effectively with YOUR DOCTOR

Intimacy & Cancer: That Thing Called Love

At some point, when you are feeling better from your  treatments, you and your partner or spouse may be ready for intimacy. Often, as we all know, even on a good day, we don’t always have feelings of desire at the same time.  It is no different when you are dealing with cancer. It helps  to have open lines of communication. Your partner may  be concerned that voicing a wish to be intimate again will be a source of stress and upset for both of you.

Tell your  partner how you are feeling about intimacy and just as important, let him/her share their feelings with you. Invite  them to ask questions. Many partners need reassurance that the person with cancer still has an interest in being intimate, and vice versa. Remember, intimacy isn’t only about physical attraction but how you and your partner or spouse thinks about your relationship together.

If you have advanced or metastatic thyroid cancer and are undergoing chemotherapy or radiation  treatment, ask your doctor or nurse when it is safe for you to be sexually active. This requires that your blood chemistry be at values that insure you have enough red, white and platelet blood cells.

If you are undergoing chemotherapy or radiation therapy always use a barrier when having sex. This most often is  a condom but can also be a dental dam that covers the vaginal wall. Barriers also protect both genders from any source of infection and women from pregnancy.


Consider different types of sexual expression other than  those that require penetration. Sensual massage focusing  on the whole body as well as the genitals is a safe alternative.  If you are a women who has trouble lubricating, ask your  oncologist or gynecologist to suggest different lubricants and moisturizers that do not contain any of the forms of estrogen.  If you are a man having trouble getting an erection, ask  your oncologist or urologist to prescribe an appropriate  erectile dysfunction medication.

If you find it difficult to have an open conversation about intimacy with your loved one consider couple’s counseling to help you both learn to cope.

Do's and Don't For Family, Caregivers & Loved One's

As a single mother of a teenage thyroid cancer patient and going through the cancer experience myself I often found it hard to talk frankly to family and friends about what we were going through or how I wish they would help. I knew that some of my friends and her friends couldn't emotionally or intellectually handle the situation and they never called us, and I found that people we hardly knew before become our best friends and helpers. 


Overtime I learned to understand that often family and friends just don't know the right thing to say to or do for a cancer family. The following is a collection of the do's I don't I wish someone had shared with me, my family and friends when cancer came interrupting our lives. 

• Do let your loved one know from time to time that you are there to help.
• Don’t call five times a day to remind him or her!
• Do give your loved one a positive, upbeat face whenever you see him or her.
• Don’t come across as terrified. It will only bring about anxiety for the cancer patient.
• Do let your loved one know you are concerned for his or her well-being.
• Don’t call three times a day to ask, “How are you feeling now?”
• Do give your loved one “alone time”  he or she needs it!
• Don’t insist on being with him or her every waking minute, or your relationship may not be able to take it. (Everyone gets a little grumpy when they are not feeling well. Don’t take it personally.)
• Do take advantage of the many support groups for family and friends.
• Don’t lean on your loved one alone to help you get through your difficult time with his/her illness.
• Do bring gifts such as magazines, CDs, books of inspiration, puzzle books, comfort food, delicious treats, fragrance-free candles and lotions, teas, movies, a soft zip-front track suit, loungewear, pajamas, a robe, slippers, and new bedding.
• Don’t bring anything that has a fragrance or scent it can bring on nausea.
• And yes!! You can come over and clean the house, do the dishes, cut the grass, walk the dog and keep take the "other" family members out for some fun. God knows they need a break too!

About The Author: Wilma Ariza is the Founder and Development Director of Stevie JoEllie's Cancer Care Fund a Project of United Charitable Programs Inc., a 501(c)(3) Public Charity Tax ID 20-4286082 Progam 102442. In 2008 her daughter Stevie JoEllie was diagnosed with State II Follicular Thyroid Cancer a few weeks after her 21st Birthday

Second Opinion Guide

Whether a recent diagnosis means you're facing surgery, chemo or any other course of treatment, it's natural to want to seek a second opinion.  But if you're not sure how to go about it, follow these steps:

STEP ONE:

LET YOUR DOCTOR KNOW ASAP. Don't worry -- he or she won't be upset! In fact, your doctor is likely to support your decision.  Input from a colleague helps ensure you get the best care possible. Simply say something like, "Doctor, I am sure you understand that I would like to talk to another physician about my condition. I wanted you to be aware that I will be seeking a second opinion and wonder how you'd like me to follow up." You could even as him for a referral!

STEP TWO:

SEARCH FOR YOUR NEW DOCTOR. If your doctor can't suggest someone, ask friends and family to recommend someone. Your insurance company may provide a list of in-network doctors in your area to help you narrow your search, or you can also visit the American Board of Medical Specialties website http://www.abms.org/ to find a board -certified specialist in any field.

STEP THREE:

NARROW YOUR CHOICES. Once you've compiled a few names, call to make sure the doctors are taking new patients, how long you'll have to wait for an appointment and if the doctor accepts your insurance, then set up an appointment with the doctor who is the best fit. 

SJCCF TIP: Found a specialist, but she's only accepting referrals? Tell your primary care doctor to write a second opinion consultation referral for you and then ask the front desk to set up an appointment for you!

STEP FOUR:

GET YOUR MEDICAL RECORDS.  Ask your primary care doctor or specialist (for thyroid cancer patients this is usually your endocrinologist or ENT) for your medical records and copies of any test results such as blood work and radiology reports. Sending (or delivering) them yourself a few days before your appointment is the best way to make sure they get there in time for your consultation.

SJCCF TIP: Aim to get your records to the second opinion consultation doctor about a week before your visit if possible to give the doctor enough time to become familiar and/or research your case.

STEP FIVE:

TREAT YOUR SECOND OPINION CONSULTATION JUST LIKE A REGULAR APPOINTMENT. Now that you're at your visit, be prepared to discuss all your symptons, just as you did with your primary doctor and to go over your records and test results. Your second opinion doctor may also ask that new or additional tests be run.

WHAT'S NEXT?

Once your second opinion doctor is ready to weigh in, one of three things will likely happen:

1) Your second opinion doctor agrees with the original diagnosis and treatment plan suggestions.

2) Your second opinion doctor might agree with the original diagnosis, but suggests a different treatment, which means you'll have to decide which treatment and provider you work best for you.

3) Your second opinion doctor disagrees completely with your original diagnosis and treatment plan, which means that you need a third opinion or ask that your two doctors speak to each other about your case.

SJCCF TIP: Make sure you understand why your second opinion doctor disagrees with your doctor and that you are prepared to seek a third opinion as soon as possible.

***********************************

Stevie JoEllie's Cancer Care Fund is working to develop and launch an access to care grant program for thyroid cancer patients and survivors nationwide. Please consider supporting our unique initiative that includes a set aside fund for healthcare access to assist thyroid cancer survivors with medical costs associated with follow up treatment, annual exams,  diagnostics and medications. 

SJCCFThyNet is a project of United Charitable Programs Inc., a 501(c) 3 Public Charity and as such all donations are tax deductible as allowed by law. 

[One time and recurring donations are fast and easy to set up.]

Yes, It's Cancer: Important To Do List.

Even healthy people need to plan for their future. Look at this task (planning for the days, weeks and months ahead) as nothing more than organizing your closet. You simply don’t want to do it, but it needs to get done. And once it’s organized, you will be relieved you have completed this task.

A good suggestion is to take care of the following task list when you are feeling good and healthy. The following tasks list might be difficult to read, digest, accept and do. This list  was not  easy for me to write when I was diagnosed with my cancer. But I know that these tasks are necessary and important. It’s a fact of life that we will all die someday.  I can’t help but look at the silver lining in everything I do that is unpleasant, sad or difficult. So here is my own two cents…Some people never get the chance for closure. As cancer patients we have the option. The  checklist below is an opportunity to make important decisions so our loved ones don’t have to guess or make difficult decisions for us.

Designate a  healthcare proxy. 

• A living will allows you to convey your wishes on paper regarding treatment when youcannot personally communicate those wishes.
• A medical power of attorney allows you to designate someone to make healthcare decisions for you when you are unable to do so. 

Ask your doctor or the patient advocate at the hospital or cancer treatment center to help you learn more about how to make  these arrangements.

Make an appointment with an attorney to create or  update your will.

Give your caregiver or  family member a power of attorney to make financial decisions if you are unable to make  them.

Make sure you know what is covered under your health insurance policy, including palliative or hospice care.

Talk to your employer about your current health status and inquire about disability coverage.

Update your life insurance policy and make sure it is signed by a lawyer and/or a witness.

Make sure your doctors and loved ones have written directions that describe your wishes, including organ donation.

Write down all your banking and life insurance policy information and the location of your safe deposit box and keys. 

Also write down your passwords to your cell phone, email, and online accounts so that your loved one can manage these should it be necessary.

Accomodating Employees with Cancer

The Americans with Dissabilities Act   requires private employers with  fifteen (15) employees or more employees as well as state and local government employers to provide adjustments or modifications to enable people with disabilities to enjoy, without discrimination  equal employment opportunities, unless doing so would be an undue hardship.

An employer must provide a reasonable accomodation tha is needed because the limitation caused by the cancer itself, the side effects of medication or treatment for the cancer, or both. For example, an employer my have to accomodat an employee who is unable to work while he or she is undergoing chemotherapy or who has depression as a result of cancer, the treatment for it, or both. An employer, however, has no obligation to monitor an employee's medical treatment  to ensure that he or she is receiving appropriate medical care (i.e. treatment).

Some employees with cancer may need one or more of the following accomodations:

• leave for doctor's appointments and/or to seek medical care or recuperate from treatment.
• periodic breaks or a private area to rest or to take medications.
• adjustments to work schedule and break time.
• permisson to work from home when possible.
• modification of office / work area temperature.
• permission to use work telephone to call doctors.
• reallocation or redistribution of marginal tasks to another employee and / or
• reassignment to another job.

Some employees with cancer may need accomodations other than the ones listed above. The employer, therfore, should discuss with the employee his or her particular limitations and whether there is anything the employer can to enable him or her to work. For example, an employer might explore the possibility of providing certain equipment, a temporary transfer to another department or changes in how work is performed.

There are "no magic" words that a person has to use when requesting a reasonable accomodation. A person simply has to tell the employer that he or she needs an adjustment or change at work because of his or her cancer. A request for reasonable accomodations also can come from a family member, friend, healthcare professional or other representative on the employee's behalf.

An employer may request reasonable documentation where a disability or the need for reasonable accomodations is not obvious. An employer, however, is entitled only to documentation sufficient to establish that the employee's cancer is a disability and that explains whe an accomondation is needed. A request for an employee's entire medical record, for example, would be innapropriate, as it likely would include information about conditions other than the employee's cancer.

An employer does not have to grant every request for a reasonable accomodation. It does not have to provide an accomodation that would result in "undue to hardship" to his business or workplace. Undue hardship means that providing the reasonable accomodation would result in significant difficulty or expense. However, if a requested accomodation is too difficult or expensive, an employer should determine whether there is another/alternative easier, less costly accomodation  that would meet the employee's needs.

An employer is not required to provide reasonable accommodations that an individual wants but, rather, may choose among reasonable accomodation options as long as the chosen accomodation is effective. In any case an employer may be required to provide more than one accomodation for the same employee with cancer. The duty to provide a reasonable accomodation is an ongoing one. For example:

• an employee with cancer may require leave for surgery and subsecuent recovery but may be able to return to work on a part-time or modified schedule while receiving chemotherapy.

An employer must consider each request for a reasonable accomodation and determine whether it would be effective and whether providing it would pose an undue hardship. An employer never has to reallocate essential functions as a reasonable accomodation but can do so if he wishes or needs to for the effective performance of his business.

An employer may not automatically deny a request for leave from someone with cancer because the employee cannot specify an exact date of return. Granting leave to an employee who is unable to provide a fixed date of return may  be a reasonable accomodation under the ADA. Although many types of cancer can be successfully treated - and often cured - the treatment and severity of side effects often are unpredicatable and do not permit exact timetables or accurate calculations.

An employee requesting leave because of cancer, therefore, may be able to provide only an approximate date of return. In such situation, or in situations in which a return date must be postpone because of unforeseen medical developments, employees (or their representatives)  should stay in regular communication with their employers to inform them of their progress and discuss the need for continued leave beyond what  originally was granted.

The employer also has the right to require that the employee provide periodic updates on his or her condition and possible date of return. After receiving these updates, the employer may re-evaluate whether continued leave constitutes and undue hardship to his business.

For more information or guidance regarding workplace accomodations for cancer patients please visit the Cancer Legal Resource Center  or call

• Toll Free #: (866) THE-CLRC or (866) 843-2572
• TDD: (213) 736-8310 
• Fax: (213) 736-1428
• Email: CLRC@LLS.edu

  

How to Contact the Telephone Assistance Line


Call 866-843-2572 (Monday-Friday, 9AM-5PM Pacific). If you reach their voicemail during business hours, they are assisting other callers. However, they now have an intake form available online. The intake form asks for information about the issue with which you would like assistance. Please consider filling out an intake form and email, fax, or mail it back to them, this will help them assist you in a timely manner.

Click here to complete the intake form online now!

Click here to download the intake form to mail or fax it!

Finding Help for Cancer Treatment Transportation

Many cancer patients have trouble traveling to and from their cancer treatment   because chemotherapy or radiation side effects and complications makes them too weak.

Transportation services are available in many communities and, although the vary, are usually one of these three types:

• Low Cost van services run by community agencies and some hospitals

• Volunteer transportation services (where someone will drive you in their car) run by local religious groups and nonprofits.

• Private transportation services (car services and taxis) the cost of which may be covered by some nonprofits, religious groups or insurance companies.

Tips to Find Help with Transportation

• Start with family and friends ~ often they want to help out and this is something concrete they can take turns doing.

• Check with your hospital ~ to see if they have a van service for people coming as outpatients (not admitted to the hospital) for radiation or chemotherapy. Or check to see if you can to arrange to carpool with other other patients.

• Contact your local  social services government office to see if they provide free or low cost transportation on a public transit system for elderly or disabled individuals (sometimes called "paratransit").

• Check with your community agencies, like the YMCA, the YWCA, Catholic Charities, Area Agency on Aging, United Way, fraternal orders or local churches.

• Paying for public transportation (taxis, ambulettes and car services) may be your only option. This can be expensive, so don't hesitate to shop around.  I was able to speak to a supervisor and his manager and after explaining my situation they agreed to a discount rate for regular use.

About The Author: Wilma Ariza is the Founder and Development Director of Stevie JoEllie's Cancer Care Fund a Project of United Charitable Programs Inc., a 501(c)(3) Public Charity Tax ID 20-4286082 Progam 102442. In 2008 her daughter Stevie JoEllie was diagnosed with State II Follicular Thyroid Cancer a few weeks after her 21st Birthday and has "survived" two thyroid cancer recurrences. Learn More About Wilma

Finding Financial Assistance for Cancer Patients

Cancer Can be a tremendous financial burden on a patient as well as on a family. Besides hospital bills, cancer treatment includes many expenses insurance often doesn't cover, such as necessary transportation and child care. If the person with cancer or caregiver has to stop working, the financial crisis becomes greater. Some relief is available, but it will take effort to piece together what is available to you according to your needs and the specific qualification criteria.

Here are some general tips for finding assistance:

Understand what assistance you are entitled to under the law (these programs are called entitlements). A hospital or community social worker can direct you to the proper government agency. Most entitlement programs take time to process yoru enrollment application forms. The sooner you request information and send in your application, the sooner you will receive assistance.

Take time to review your health insurance policy, as well as any other insurance policies you may have, to better understand your coverage. Ask your insurance company if they can assign you a case manager to help you and answer you questions.

If you need help with hospital expenses, not covered by insurance or copays you no longer can afford ask to speak with a financial counselor in the business office of the hospital who can help you develop a monthly payment plan, process a co-payment waiver for you or a charity care application.

If you expect to run out of money or already have and cannot meet your daily living expenses like rent and food talk directly to your creditors and explain your situation. Many utility and mortgage companies for example will work out a payment plan wih you before a crisis develops.

Don't forget about the power of using your local elected officials. They often have resources and connections that can be useful. If you are having difficulty with Medicaid, calling the office of your state representative might help; for Medicare problems, your federal representative or senator's office may have information and assistance.

To find out who your elected officials are and how to contact them, contact Project Vote Smart at www.vote-smart.org or call the agency toll free 888.868.3762

About The Author: Wilma Ariza is the Founder and Development Director of Stevie JoEllie's Cancer Care Fund a Project of United Charitable Programs Inc., a 501(c)(3) Public Charity Tax ID 20-4286082 Progam 102442. In 2008 her daughter Stevie JoEllie was diagnosed with State II Follicular Thyroid Cancer a few weeks after her 21st Birthday and has "survived" two thyroid cancer recurrences. 

Getting the Most from A Service: What to Ask.

Sometimes it is more important to know the right questions to ask rather than to know the right answer.

Before you call an organization for information, or to find out if it provides the service you need, it is important to know which questions you are going to ask. Therefore, it is a good idea to:

Write out your questions beforehand.

• Keep a pen and pad on hand as you speak to someone in person or on the phone to take notes.

Always ask with whom you are speaking, so if you have follow up questiosns you can contact them again.

Once you have found a group or organization that can help you I suggest you ask the following questions which can help you get the most from what they have to offer.

1. How do I apply for [this service or assistance]?
2. Are there eligibility requirements ? What are they?
3. Is there an application process? How long will it take?
4. What information will I need to complete the application process?
5. Will I need anything else to get the service or assistance I am requesting?
6. Do you have any other suggestions or ideas about where I can find help?

These questions will help you be prepared, feel more secure about discussing your needs, and get the most out of the resources that are available to you or your loved one.

About The Author: Wilma Ariza is the Founder and Development Director of Stevie JoEllie's Cancer Care Fund a Project of United Charitable Programs Inc., a 501(c)(3) Public Charity Tax ID 20-4286082 Progam 102442. In 2008 her daughter Stevie JoEllie was diagnosed with State II Follicular Thyroid Cancer a few weeks after her 21st Birthday and has "survived" two thyroid cancer recurrences. 

Cancer Warrior: Fighting Back & Getting Organized

After a cancer diagnosis, many people find that becoming well-organized helps them gain a sense of control over all the information they receive, including financial information. To do this, first steps include finding out who best will answer the specific questions you have and setting up a personal organizational system. 

The following suggestions may help you organize your cancer care paperwork:

• Find the filing system that works for you. A filing cabinet or simple desktop divider with individual folders keeps key information all in one place and makes it quick and easy to find. File new information as soon as possible, so it doesn't get misplaced. Your files may include notes made during doctor appointments, copies of your laboratory test results, your personal insurance information, and contact information for your doctor’s office, medical center, insurance company, support organizations, and others.
  
  
• Ask your health insurance company if you can be assigned a case manager, so you can talk with the same person each time you need to call. Also, maintain a written record of any conversations with all insurance company representatives, including the date, name of the person you spoke with, and what was said. Put the newest records at the front of your file, so you have a clear and up-to-date list of these discussions.
  
  
• Keep current copies of all insurance policies and refer to them by name and number in any communications about insurance coverage.
  
  
• Write down the list of questions that are most important to you, using the suggestions in this booklet or others. Start with your most important questions to make sure these are answered first.
  
  
• Try to decide ahead of time how to adjust your budget to deal with any loss of income resulting from less time at work, or expenses that are not covered by insurance.
  
  
• List each task you need to accomplish between doctor appointments, and put a check mark beside each one when you complete it to mark your progress.
  
  
• Ask a friend or family member to help you keep track of your regular monthly bills, or consider using a bill-paying service to help keep your payments on time.

Healthcare Reform & You

In March 2010, the Patient Protection and Affordable Care Act – often called simply Health Reform – was signed into law, changing several rules regarding health care insurance coverage in the United States. For people with cancer, this new law covers areas regarding both the cost of and access to care. Some changes took effect immediately, and others will take effect in the coming years. 

Highlights of the new law are summarized below and are adapted from information from the Kaiser Family Foundation, unless otherwise noted. This list is not intended to be a complete outline, but rather is meant to provide an overview of major areas of health reform relating to the cost of and access to cancer care. More details can be found at the federal government’s website of www.HealthCare.gov.

How Does Health Reform Help You Now?

General Insurance Reform

• Private health plans are not allowed to place a lifetime limit (called a cap) on the dollar value of a person’s coverage. Subject to certain restrictions, insurers are permitted to place an annual limit on the dollar value of coverage until January 1, 2014, but will not be permitted to enforce annual limits after that date.

• Insurers cannot take away coverage except in cases of fraud. Previously, insurance companies could revoke coverage for an error or technical mistake in a patient’s insurance application. This practice is now illegal.

• Insurance plans that offer dependent coverage are now required to make coverage available to adult children up to age 26 (although certain “grandfathered” group health plans may exclude such coverage if the adult child is eligible to enroll in a health plan through his or her own employer).

• Dependent children under age 19 cannot be denied coverage for pre-existing conditions.

For People Without Health Insurance

• Uninsured individuals with pre-existing medical conditions now have access to a temporary national high-risk insurance pool program. U.S. citizens and legal immigrants who have been uninsured for at least six months are able to enroll for coverage through this high-risk pool and receive subsidized premiums. (Effective until January 1, 2014.)

• States must establish a website to help residents identify coverage options in a standardized format. This includes the federal government’s HealthCare.gov website, which provides information on the new law and insurance options for consumers.

Elimination of Co-pays for Preventive Services

Cancer prevention and risk-reduction strategies can lower the physical, emotional, and financial burden of cancer and improve the overall health of cancer survivors, including reducing the risk of the cancer coming back or the chance of a second cancer. The new law includes several provisions to increase access to cancer prevention services:

• Private health insurance plans issued after September 23, 2010, are required to eliminate co-pays for preventive services recommended by the U.S. Preventive Services Task Force (USPSTF; www.uspreventiveservicestaskforce.org) including but not limited to:
  
  
1. Screening tests for colon cancer for adults over 50.
2. Annual mammograms for women over 40. Other services to prevent breast cancer will also be covered, including a referral to genetic counseling and a discussion of chemoprevention for certain women at increased risk.
3. Regular Pap tests to screen for cervical cancer and coverage for the HPV vaccine, which can prevent cervical cancer.
4. Tobacco cessation interventions, such as counseling or medication to help individuals quit smoking.

• Co-pays for Medicare-covered preventive services recommended by the USPSTF have been eliminated. The Medicare deductible for colorectal cancer screening tests have also been eliminated. Both changes were effective January 1, 2011.

How Will Health Reform Help You in the Future?

General Insurance Reform

• Adults cannot be denied coverage for pre-existing conditions. (Effective January 1, 2014.)
• Waiting periods for coverage greater than 90 days will be eliminated by January 1, 2014.

For People Without Health Insurance

• Most U.S. citizens and legal residents will be required to have health insurance beginning in 2014. Exemptions can be granted for financial hardship, religious objections, American Indians, those without coverage for less than three months, undocumented immigrants, people in jail, people for whom the lowest cost plan option exceeds 8% of an individual’s income, and those with incomes below the tax filing threshold. (In 2009, the threshold for taxpayers under age 65 was $9,350 for singles and $18,700 for couples.) Penalties for not having health insurance will be phased in beginning in 2014.

• Medicaid coverage will be expanded to individuals with incomes up to 133% of the federal poverty level who are under 65 and who are not otherwise eligible for Medicare. (The poverty level was $18,310 for a family of three in 2009.) (Effective January 1, 2014.)

• State-based health insurance exchanges will be established to help people and small businesses with the purchase of coverage. Premium and cost-sharing credits will be available to individuals and families earning up to 400% of the federal poverty level. The Office of Personnel Management, a federal government agency, will begin contracts with health insurance providers to offer at least two multi-state plans in each exchange. (Effective January 1, 2014.)

Elimination of Co-Pays for Preventive Services

• Co-pays for Medicaid-covered preventive services recommended by the USPSTF will be eliminated, effective January 1, 2013.

For Individuals Participating in Clinical Trials

• As of January 1, 2014, insurers will not be allowed to limit or drop coverage to an individual choosing to participate in a clinical trial. This applies to clinical trials to treat cancer, in addition to other life-threatening diseases.

Cancer Care Costs: Questions to Ask

Bringing up your financial concerns to others is difficult — especially if you don’t know what to say, or who to ask. It's not always clear who the best person is to answer your questions, so talking with your doctor is a good start. Try starting the talk by saying: “I am worried about costs related to my cancer treatment. Can we talk about my concerns?”

Your doctor may not have all of the answers to your financial questions, but can give you resources to help you get the best possible information. Several people and groups will help you find answers, including doctors and their support staff, nurses, social workers, case managers, patient advocacy organizations, and your employer’s human resources department. And, people from your insurance company can help on questions about your specific health care coverage.

Next, use the questions below to help focus the discussion. You don’t need to ask all of these questions – just choose the ones most important to your diagnosis and your financial situation.

Select the ones you are most concerned about, and ask those first. If you think the doctor is the best person to answer your questions, let the doctor’s office know ahead of time that you have some questions that you’d like to ask the doctor during your appointment, so enough time can be scheduled. Be sure to write down the answers so you can go back to your notes later. And, remember: these talks between you and your health care team will continue during your care.

Insurance Coverage and Medical Bills

• Who handles concerns and questions about health insurance in this office or medical center?
• Will this person help me work with my health insurance company/provider?
• Will this person help me figure out my medical bills and the codes on the bills to make sure they are correct?
• If an insurance claim is denied, who can help me file an appeal?
• Is there a limit to how much my insurance will cover for my treatment? If so, are my medical bills likely to reach that amount?
• I already have health insurance. What does the health reform law mean for me?
• I don’t have health insurance. What does the health reform law mean for me?
• Where can I find help in organizing my expenses, so I can keep track of incoming bills and plan my budget?

Doctor Appointments

• How much is my co-pay for each doctor visit?
• When is this payment due?
• If I need multiple visits to a doctor’s office, is there a policy where I can pay the co-pay only once or not at all (called a waiver)?
• Do you offer any payment plans?
• Will I be billed separately for laboratory tests, such as blood tests? Are they covered under my health insurance?
• Does my insurance cover other doctor visits, such as for a second opinion?

Cancer Treatment Costs: General

• Who can help me estimate the total cost of the recommended treatment plan?
• If I cannot afford this treatment plan, can we consider other treatment options that don’t cost as much?
• Does my health insurance company need to approve any or all of the treatment plan before I begin treatment?
• Do you have any financial conflicts-of-interest in recommending this plan for me?
• Is the treatment facility you are recommending in my health plan’s network?
• If I need to be admitted into the hospital, what is covered under my health insurance?
• If I receive treatment as an outpatient, what is covered under my health insurance?
• Are there ways to change my treatment schedule, if necessary, to work around my job or child care?
• Will there be a co-pay for each individual treatment?
• Where can I get low-cost or free counseling or support to help me cope with my diagnosis?

Cancer Treatment Costs: Clinical Trials

• What expenses will I have if I join a clinical trial?
• How do the costs of the clinical trial compare with the costs of the standard treatment? Does one cost more than another?
• Can I be reimbursed for any of the costs of the clinical trial?

Medication Costs

• What is my prescription co-pay for this drug?
• Is this prescription a one-time cost, or will it be an ongoing expense?
• Is this medication on my health insurance plan’s preferred drug list?
• Can I switch to a less expensive brand-name drug within the same drug class?
• Is there a generic drug available that will have the same effect? Is it less expensive?
• Can we regularly go over my list of medications, to see if there are ways to lower my drug costs?
• For medications for side effects, is there an over-the-counter medicine that has the same effect as the prescribed drug? Is it less expensive?
• Are there programs that can help cover the costs of my drug(s) for cancer treatment or side effects?

Associated Expenses: Transportation

• Is there free or low-cost transportation for patients at the medical center where I will have treatment?
• Are there reduced parking rates for patients at the medical center or doctor’s office?
• Is there an organization that can help me pay for transportation to and from treatments and medical appointments?
• If I am traveling a long distance, are there free or reduced-cost hotels or lodging near the treatment facility?

Associated Expenses: Family and Living Expenses

• If I have trouble paying for basic items, like 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 my 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 my family?

Associated Expenses: Caregiving, At-Home Care, and Long-Term Care

• Are there ways to change my treatment schedule, if necessary, to work around my caregiver’s job and schedule?
• Could we talk about costs of care if I don’t have a family member or friend to go with me to appointments or 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?

Associated Expenses: Employment, Legal, and Financial Issues

• Who can I talk with if I’ve lost income because of my cancer?
• 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 his or her 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?
• 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?

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Stevie JoEllie's Cancer Care Fund is working to develop an access to care grant program for thyroid cancer patients and survivors nationwide. Your financial support is greatly needed. 

Stevie JoEllie's Cancer Care Fund is a project of United Charitable Programs Inc., a 501(c) 3 Public Charity.   Donations are tax deductible as allowed by law and all funds raised by Stevie JoEllie's Cancer Care Fund are received by United Charitable Programs and become the sole property of UCP, which, for internal operating purposes, allocates the funds to the Project (SJCCFThyNet). The Program (SJCCFThyNet) Manager makes recommendations for disbursements which are reviewed by UCP for approval.

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