| After the initial crushing diagnosis, as they come to terms with their child's life-threatening illness, parents must take their child through the debilitating, painful treatments which they hope will lead to a cure. Then, just as they begin to find their footing on the long, heartbreaking road through the minefield that is a childhood cancer diagnosis, they discover a new enemy - the medical bills start to arrive, and the siege begins in earnest. Invariably, one parent has to stay at home to care for the sick child, and this may result in the loss of income, and employer-linked insurance. Paediatric oncology is a highly specialised area of medicine and often demands that families travel great distances for specific care. They therefore incur extra costs for transportation, food and lodging, and may also have to pay for their other children to stay with child-minders. Many childhood cancers are more aggressive than those which occur in adults, and so the treatment tends to be much more intensive - with costs to match. Many of these treatments are also experimental. The US National Institute of Health estimates that upwards of 60% of childhood cancer patients (between birth and 16 years of age) are receiving treatment as part of clinical trials, compared with just 2% in the 20-30 age group. As these clinical trials use drugs not yet registered with the Food and Drug Agency (FDA), they are rarely covered fully by insurance policies, if at all. The Patient Advocate Foundation is a national US non-profit organisation which mediates between insurers, hospitals and patients to help people with life-threatening illnesses who are struggling to pay their bills. Last year, the foundation received 2.4 million requests for help, 70 percent of which were cancer related. Many of these pleas were from families who were facing the prospect of bankruptcy, despite having insurance policies. The increase in insurance claims in recent years has seen a dramatic response from companies, cutting benefits, particularly for cancer therapies. I spoke with one family who estimate that their daughter's leukaemia treatment and hospitalisation has cost a total of £135,000 since March. Although the family has a comprehensive insurance policy, they still have hefty bills to pay. Their insurance premium is approximately £10,000, and deductibles amount to £3,500. "Co-pays" for prescription drugs mount up quickly, and mother has been living at the Ronald McDonald House, six hours away from the family home, for the duration of her daughter's five month hospitalisation. Estimates from the US National Institute of Health and other bodies suggest that more than 25% of total family income is swallowed by medical co payments, travel, accommodation and other incidental expenses, even when the family is fully insured. The family of an uninsured or inadequately insured child is likely to lose savings, and some have even lost their home in an effort to ensure their child's treatment costs are met. |
| "Do not go where the path may lead, go instead where there is no path - and leave a trail." ~ Ralph Waldo Emerson ~ |
| Financial Support. |
| ORPHANS OF THE CANCER STORM |
| Disclaimer This information page has been prepared by an individual who does not have medical training. Contributions have been shared by the parents of children diagnosed with retinoblastoma or optic glioma. Orphans of the Cancer Storm cannot make any assurances relating to the validity of medical information contained within this page. The OCS website is intended for information purposes only and should not be used as a guide to diagnosis or treatment. If this information raises any concerns about your child’s condition or care protocol, discuss them with his or her paediatrician, oncologist, or other appropriate medical professional who has knowledge of the case. |
| Although the article relates specifically to the US childhood cancer experience, families around the world face extra financial burdens during their child's illness, even in countries with full insurance or a national health system, such as Canada and the UK. Money worries heap great stress on the already overwhelmed family, and most require some form of financial assistance during treatment and beyond. |
| "Money from work and churches, we have put in the Kati fund for overnight trips to hospitals etc." "Friends of our family, who own a local store, asked if they could establish a collection for our daughter. Although we were touched, at first we said no. We really had no idea about the costs involved in treating her in the beginning. Once we began to understand the magnitude of what we were up against, we gratefully accepted. The collection box in the store grew into a medical fund which was supported by our entire community. Many times we have been blown away by the selfless giving of others." |
Set up a medical support fund for the child. Organise fundraisers such as a cake sale, raffle, sponsored swim or social gathering to boost donated funds. Arrange an informal collection among work colleagues, clubs or church community to which the family belongs, and give it to the parents. |
| "I work for a large company that is full of nameless people. When my daughter was on chemo and my own leave was all used up, a group of people I didn't know came to my office and told me they wanted to give me their vacation time so that I wouldn't lose a pay check. My mouth dropped open! Sacrificing leave for a stranger is just about the greatest gift anyone has given me." |
Many governments and companies operate a leave bank system which enables ailing employees or those caring for a sick relative to use the leave of colleagues so that they won't lose pay whilst absent from work. |
| "We would have appreciated financial support. It isn't just the treatment itself that can be financially draining, but also the travelling and the living costs away from home. We didn't feel we could ask for this kind of help, but would have gladly accepted it if people had offered." "I felt guilty but also overwhelmed that people cared enough to give us money. But it is nice to know we have a little cushioning should we need it." "When Sarah was diagnosed with the secondary cancer, a pineoblastoma, it took us by complete surprise. We gratefully accepted some financial help from our parents. They helped us with buying things such as clothing, food, and taking care of our son's basic financial needs. These things may seem small to some people. However, since we were far from home during her treatment, we appreciated any help we were given." "It was hard accepting money from people, but at the time we really needed it or we wouldn't have been able to stay in our home, eat, etc. etc." "[it] helped us keep our house." |
| Supporting the family through financial distress may help them avoid a money meltdown in the long run, and many parents place this gift closely after their child's life and family strength. Below are some suggestions of how you can help ease the financial burden, if the family is receptive or actively asks for support. |
| "My husband works at an auto repair shop. At one point, his boss told him he was missing too much work, and might lose the job if he didn't increase his hours. This was an awful time of uncertainty, because we have always approached our children's cancer as a team, and we always attend the doctor consultations together. One of his co-workers realized the problem and suggested the remaining staff each take a little over-time to ensure my husband's share of the work was done. The boss was happy with that - so long as no one expected to be paid for the overtime. My husband kept his job, and our family stayed afloat because of those people." |
There are several job sharing possibilities. Colleagues could volunteer to cover a parent who is spending time with their child at the hospital, or several friends with appropriate abilities (such as office skills, electronics or sales work) could donate time to rotate through the post, covering for the parent. These arrangements help ensure the job is done, prevent financial loss to the family, and maintain harmony at the workplace. |
| "As we don't have good sight, we found the paperwork quite overwhelming. It was good to have friends read things through with us. My husband's niece also helped put things into the computer so that we could keep track ourselves. That made a difficult task much easier, especially when we were communicating with insurance and needed to pull up documents quickly." "Our insurance refused to pay for the artificial eye, insisting it was classified as a non-essential cosmetic procedure. We needed to respond promptly to this, but we were still away from home as our daughter continued to have chemo for the brain tumor. One of our friends offered to deal with the case worker on our behalf, and she did a great job. The company eventually paid up for the prosthesis." |
Processing the medical bills is invariably an extremely time consuming, bewildering and arduous business. A close relation or trusted friend could offer to assist the parents by reviewing, organising, and filing the copious amounts of correspondence, or entering records onto the computer. You could also help resolve contested claims or billing inaccuracies by communicating with the relevant agencies on behalf of the family. |
