According to national surveys, approximately 30 million people will experience an eating disorder throughout their life. These illnesses are life threatening (and even the third cause of death for women in America) and involve mental and physical aspects that both have to be equally seriously treated. The earlier the diagnosis, the more chances of recovery a patient has. In any case, these illnesses cannot go untreated: they necessitate important medical attention, and in a lot of cases this involves full time hospitalization, also known as inpatient care. If he or she can pay.
The American Psychiatric Association distinguishes between five levels of care when it comes to treating eating disorders. First are three levels of outpatient care going from appointments with a psychiatrist to a partial hospitalisation, also known as full day outpatient care. On a fourth level is residential treatment and on a fifth inpatient treatment, which involves the patient being locked up in a specialized treatment center.These levels are gradual and they are meant to respond in the best way possible to the specificities of each patient’s case. At least on paper.
The National Eating Disorder Association (NEDA) has extensive documentation explaining how a general care provider usually decides on which level of care would best fit a patient and accurately respond to its medical needs. The text provided by the association reads, as one of its first points:
« The intensity and duration of the treatment depends on:
- Insurance coverage limits and ability to pay for treatment »
In reality, money often comes before a patient’s medical needs. Obtaining coverage for eating disorder treatments is paved with obstacles and mentally exhausting for the families of patients who already have to go through their loved one’s illness (when patients are lucky enough to have people caring about them, and families willing to take the time to help). Getting an insurance provider to reimburse these types of medical expenses often involves having to make appeals and calling the insurer multiple times, being « persistent, assertive and rational ». It also involves getting as much information on the plan as possible, even if this usually involves reading the full description of the plan and « this document may be longer than a hundred pages », states once again the NEDA. What about those who do not have the legal literacy to understand what is at stake in those documents? Those who do not have parents or family to take care of the paperwork for them? The NEDA also stresses the usefulness of hiring an attorney to help with the case. What about those who cannot afford legal representation, as they are additionally most likely to be the ones who cannot afford care in the first place?
All in all, in the United States, getting access to a decent and appropriate treatment and partial coverage for the expenses attached to it appears almost as complicated as getting a PhD.
Insurers do not cover eating disorder expenses the same way. On paper, the situation is better than it what it used to be prior to December 2016, date at which a new law concerning the obligation for insurance providers to cover equally for physical and mental expenses passed. However, in reality, getting an insurer to reimburse these expenses is still very complicated, and no insurance plan will cover them entirely. Most plans propose to cover 12 psychiatric visits per semester. In many cases, these are of course not sufficient. Inpatient care costs on average 30 000$ a month, and many parents have so far had to find ways to pay for this through other means, among which the dilapidation of their retirement savings.
Primary care providers are the ones deciding over what is the most adapted treatment, considering their patient’s condition and financial resources. A treatment center is chosen according to the insurer’s affiliations with those types of structures. The care provider also discusses with the insurer, and even if the insurer does agree to pay part of the expenses, demands for extensions have to be made on a regular basis. Most of the time, insurance providers agree on covering several days of treatment, when inpatient treatments often requires the stay to be a few months before they start being effective. Moreover, the insurer can deny further care if it notices a « lack of progress in treatment », which manifests itself either by the patient « not restoring weight », « no reduction in behaviors », or a« lack of motivation in treatment ». However, eating disorders are also mental issues, and the patient is not always willing to get better in the first place as he is mentally caught in a vicious circle. It is often the families who have to take action, and take their love one to see a care provider or a psychiatrist.
In anyway, being met by a refusal of even partial coverage for those medical expenses is stressful, and puts an additional burden on already worried families. Here are three ways to try to unlock your situation, and one way in which the system could be amended – but this last element requires an increase in awareness, and would need people to bring the issue in the spotlight for actors to take on the issue.
NEDA: A first step towards getting your insurer to cover for part of your expenses
Denial of coverage or refusal to provide further care can of course, be appealed. As odd as it may sound, these denials are actually to be expected. Families and patients should not feel desperate by these steps that are most of the time mandatory obstacles before getting partial financial coverage. NEDA provides extensive documentation, available to families for free. This documentation is highly valuable, and needs to be checked if needing guidance on how to make an appeal . NEDA proposes models of letters (p.53) that can be sent to insurers, and phone call scripts worth consulting (p.60).
NEDA also offers a helpline (1-800-931-2237). However, this helpline is not meant to provide help on extensive case to case solutions. If requesting a lawyer to manage your case is too expensive, you should consider taking the next step: contacting your representative in Congress.
Your representative: don’t be afraid to take the step – especially if you are covered by Medicare
Contacting a US representative is most efficient if your medical coverage is Medicare / Medicaid, as these are federal agencies. Your congressman might not have as much leverage if your health care plan is private.
You can find your own representative here, and should try to give a phone call to its cabinet in order to clearly expose your problem. You should not try to contact more than one of your representatives at the time, as this will not make your request process faster. Stressing the urgency of your request might be worth a try, but remember that in most cases you will have to be patient. However, cabinet members are hired to serve the representatives’ constituants, and these are issues they are here tackle. It can just take time.
The grant option
If you are unable to pay for the very out of the pocket cost of the coverage, which can rise up to 6000$ depending on your health plan, (such as for Blue cross Blue Shield), one solution might be to request a grant. Non profit associations, most of the times funded by family members of deceased patients, do propose such awards on return of application. Here is one you can contact to ask for financial help. You will have to return an application form, that can be downloaded here.
In a perfect world there would, of course, be universal and full healthcare coverage (if in search of an example, most european countries do so and it works -and Scandinavian countries are particularly good at this.) However, this is highly unlikely to happen in a near / far future.
What could be done, then? Private foundations should step in, and consider providing fundings to create structures that could provide eating disorder treatment for free. For the most part, these illnesses target young people, who have a future and a role to play in our society. Funding such structures is giving them a chance to recover and fully take advantage of what lies ahead. Private organisations in foreign countries already do fund such treatment centers. In France, the Maison de Solenn is funded by Jacques and Bernadette Chirac via the Fondation des Hôpitaux de Paris, and provides inpatient and outpatient care to anorexic girls. Why not transpose this model to the United States? Demand for such structures is high, and there is a lot of work lying ahead to change how eating disorders are taken into account in the united states, and who gets access to treatment.