You have just received a diagnosis of cancer. You probably tell your husband or wife and your closest friend, but when do you tell your children? And what do you tell them? You are feeling stunned and shaken…how can you possibly help them deal with what is clearly going to be a life-changing event? Explaining cancer to a child is difficult and requires thoughtfulness, compassion, and some understanding of how children of different ages deal with trauma.
Problems with sexual functioning can be one of the most distressing consequences of cancer treatment.1 Understanding and communicating these problems is an important part of the path towards finding solutions. Fortunately, thoughtfully designed and clearly reported research is becoming increasingly available on this subject.
In this article, part of our continuing Becoming Your Own Advocate series, we focus on the results of recent clinical studies on the physical and emotional aspects of sexual health related to cancer treatment, discuss the common problems people experience, and offer solutions that have been developed to resolve or cope with these issues.
It is important to understand that sexual feelings, interest, and functioning can return after treatment. The goal of this article is to provide patients facing or going through cancer treatment with resources, evidence, and questions to ask.
SEXUALITY AND SECUAL HEALTH
The World Health Organization offers a holistic definition of sexuality, describing it as “a central aspect of being human throughout life” which “encompasses sex, gender identities and roles, sexual orientation, eroticism, pleasure, intimacy, and reproduction. Sexuality is experienced and expressed in thoughts, fantasies, desires, beliefs, attitudes, values, behaviors, practices, roles, and relationships.” Similarly, the WHO describes sexual health as “a state of physical, emotional, mental, and social well-being in relation to sexuality; it is not merely the absence of disease, dysfunction, or infirmity.”2 The following diagram shows several ways to illustrate the multifaceted landscape of sexual health and the dynamic relationship between a person’s sexuality and their cognitive, physical, and relationship health.3
WHAT ARE THE EFFECTS OF CANCER THERAPY ON SEXUAL FUNCTION? HOW COMMON ARE THEY?
There are various sexual problems experienced by people living with cancer and, generally, 1) these problems can appear suddenly, usually during or immediately after treatment, although sometimes they may not appear for several months after treatment is finished,4 2) these problems also tend to be pervasive, impairing more than one phase of the normal cycle of sexual desire, response, and arousal. 3) Other symptoms related to cancer or its treatment, such as pain, nausea, fatigue, anxiety, disturbed sleep, or bowel and urinary symptoms that can be difficult to control, can make maintaining sexual activity all the more challenging.4 4) These effects can be long-lasting, persisting in some cases for many years.4
SEXUAL PROBLEMS EXPERIENCED BY WOMEN WHO HAVE CANCER
As early as 1985, it was reported that up to 90% of female cancer survivors reported some type of problem related to sexual function.1
BREAST CANCER TREATMENT
Menopause caused by breast cancer treatment can lead to a wide range of side effects, including vaginal dryness, pain during intercourse, alterations in mood, cognition and libido, and weight gain.5, 6 These problems, however, may not be caused solely by the early onset of menopause. Compared to treatment with hormonal therapy, women treated for breast cancer with chemotherapy are six times more likely to report vaginal dryness and pain during intercourse, three times more likely to report decreased libido, and a survey of 50 women treated for breast cancer with surgery and chemotherapy and/or radiation, while 90% of the subjects continued sexual activity after treatment, 48% reported low sexual desire, 38% reported pain during intercourse, and 42% had lubrication problems. About one-half of the women experienced changes in the relationship with their partner.8 Other research suggests that these problems may occur more often in younger women.9
BREAST CANCER SURGERY AND SELF-IMAGE
Compared to women who underwent mastectomy, those treated with breast conserving surgery had a more favorable body image and better psychological, relationship, and social adjustment.10, 11
Among survivors of cervical cancer, those women treated with radiation had worse sexual functioning than did those treated with radical hysterectomy and lymph node dissection.13 This information may be an important area of discussion in consultation visits for pre-treatment planning. An additional area of concern for women diagnosed with cervical cancer is whether there is a history of sexual abuse; including this information in the consultation discussion can also help guide treatment.14
Among men treated for prostate cancer, the prevalence of sexual dysfunction is as high as 70%, although this is lower in men who were eligible for and decided to choose “watchful waiting,” in which the disease is closely monitored, but no aggressive treatment is initiated yet.4 Each of the various treatments for prostate cancer can cause sexual problems: Prostatectomy can cause erectile dysfunction in 30% to 98% of men, depending on whether both, one, or neither nerve bundles was spared. Radiation treatment for prostate cancer can cause erectile dysfunction in over 70% of men, although this occurs less often with brachytherapy, a type of radiation therapy. Over 80% of men treated with hormonal blockade report erectile dysfunction and a lack of libido one year after beginning treatment.12
PROBLEMS RELATED TO PAIN AND ITS TREATMENT
A case report from the MD Anderson Cancer Center reported substantial improvement in sexual function in a male patient who was able to reduce his need for opiate pain medication.15 (See Integrative Cancer Pain Management.)
HOW DO YOU DESCRIBE AND COMMUNICATE SEXUAL FUNCTION
Most of the questionnaires that have been developed for monitoring sexual side effects of cancer treatment focus on a specific treatment or body system and are therefore most useful in a research context. One example of this is the C-PET questionnaire, a simple checklist for monitoring side effects in women receiving hormonal therapy for breast cancer.9 However, our goal in this article is to provide information that could help initiate a conversation about sexual problems; one very good example is the ALARM Model for the Assessment Of Sexual Functioning, developed by the American Cancer Society. (See “ALARM Model for the Assessment of Sexual Functioning” sidebar below.)
COMMUNICATING WITH YOUR HEALTH CARE PROVIDER
Medical providers should tell people who are about to begin cancer treatment what to expect, how to minimize the risk of problems, and what to do if they should occur. Practitioners should incorporate questions concerning sexual difficulties and intimacy into the initial evaluation of patients with cancer.4
WHAT CAN HELP?
A substantial number of helpful treatments are available. Some are evidence-based, as described below, and others are based on common sense and personal insight.
Additionally, there are various clinical trials now underway across the country to help identify new solutions (see our website for more details and contact information).
» Acupuncture: In a pilot study, 15 women experienced improved anxiety and depression with reduced hot flashes, although they reported no change in libido.16
» Communication: A study conducted at the Indiana University Cancer Center found that a guided program of discussion and interactive computer questionnaires helped patients with prostate cancer to first identify and then address quality of life concerns. Participants met monthly over a six month period with an oncology nurse who helped them identify their needs using an interactive computer program. Patients in the program reported significantly better gains in sexual functioning than the controls receiving “usual care.”17
» Patient-Practitioner Communication: A study of women with ovarian cancer found that they “wanted medical staff to discuss sexual issue” but that “health professionals rarely discuss sexual issues because of lack of time, embarrassment, or inexperience, and that professionals need training to help them communicate more comfortably with their patients about sexual issues.” (See “Belief & Reality” sidebar below.)18 Patients can help by initiating a discussion where they feel it’s appropriate and might be helpful.
» DHEA: In a group of women with adrenal insufficiency, one study reported that DHEA (50 mg daily) improved overall well-being, an increase in sexual interest, increased frequency of sexual thoughts, and improved satisfaction with both mental and physical aspects of sexuality.19 That same dosage level has also been reported to help men with erectile dysfunction.20-22 DHEA is not recommended, however, for people with breast, endometrial, or prostate cancers.23,24
» Exercise: A recent study found that physical activity was correlated with better sexual functioning in men who received external beam radiotherapy.25 It is possible, and reasonable, that similar benefits would be gained by patients receiving treatment for other types of cancers. (See Exercise & Health.) A specific type of therapeutic exercise, Kegel exercise, can be helpful for both men and women in increasing awareness of sexual response, increasing orgasmic intensity, and enhancing pelvic circulation and sphincter control.26
» Medication Therapy: A small case series of eight patients reported improvement with erectile dysfunction after a six-month treatment of testosterone and sildenafil.27 As with DHEA, use of testosterone is not recommended in men with prostate cancer. 28 Bupropion may be helpful in people experiencing sexual side effects due to antidepressant medication or narcotic treatment for pain.29 Selective serotonin re-uptake inhibitors may also help reduce hot flashes and improve sleep and libido.30
» Massage: While we located no studies specifically measuring improvement in sexual function in patients receiving massage therapy, there is evidence for its ability to lower cortisol levels (one of the stress hormones) and raise serotonin and dopamine levels (associated with feelings of well-being).31 It is also a technique with a high degree of safety.
» Reading: There are a number of excellent books that candidly discuss the kinds of sexual problems both men and women are likely to face after treatment (see below for specific titles). Solutions are also suggested, including information on body image, low sex drive, performance anxieties, medications, sex aids, and reconstructive surgery.32
» Therapeutic Devices: Women who have had pelvic surgery, radiation therapy, or graft-versus-host disease that resulted in reduced vaginal size or elasticity may be helped by a combined program of relaxation exercises along with vaginal dilators of gradually increasing size.32 In a study of 15 women who had been treated for cervical cancer with radiation, a therapeutic device that enhances blood flow to the clitoris by creating gentle suction demonstrated significant improvements in sexual desire, arousal, lubrication, orgasm, sexual satisfaction, and reduced pain after three months’ use (Eros Therapy: www.urometrics.com or (877) 774-1442).33 The author of a well-written paper on helping women with sexual dysfunction very candidly wrote that “treatment of orgasmic disorders relies on maximizing stimulation and minimizing inhibition.”26
» Cancer Treatment Strategies: In some cases, the choice of treatment for cancer can help minimize sexual problems. For example, for men with prostate cancer, the use of intermittent hormonal blockade may have a better outcome than continuous blockade.34
Although much work remains to be done to develop better ways to prevent and treat sexual dysfunction related to cancer treatment, it is encouraging that researchers are focusing more and more on this important problem. It is our hope that this summary of information will be useful to patients, their partners, and health care providers.
WOMEN: “SEX ISN’T WORKING FOR ME. WHAT CAN I DO?”
To improve your desire, change your usual routine. You may want to rent an erotic video or read a “sexy” book with your partner. Arousal disorders can be helped if you use a vaginal cream for dryness. Mineral oil also works. If you have gone through menopause, talk to your doctor about taking estrogen.
If you have a problem having an orgasm, masturbation can help you. Extra stimulation (before you have sex with your partner) with a vibrator may be helpful. You might need rubbing or stimulation for up to an hour before having sex. Many women don’t have an orgasm during intercourse. If you want an orgasm with intercourse, you or your partner may want to gently stroke your clitoris.
If you’re having pain during sex, try different positions. When you are on top, you have more control over penetration and movement. Empty your bladder before you have sex. Try using extra creams or try taking a warm bath before sex. If your sex pain doesn’t go away, talk to your doctor.
If you have a tight vagina, you can try using something like a tampon to help you get used to relaxing your vagina. Your doctor can tell you more about this.
What Else Can I Do?
Learn more about your body and how it works. Ask your doctor about how medicines, illnesses, surgery, age, pregnancy, or menopause can affect sex.
Practice “sensate focus” exercises where one partner gives a massage, while the other partner says what feels good and requests changes (for example: “lighter” or “faster”). Fantasizing may increase your desire. Squeezing the muscles of your vagina tightly and then relaxing them may increase your arousal. Try sexual activity other than intercourse, such as massage, oral sex, or masturbation.
What About My Partner?
Talk with your partner about what each of you like and dislike, or what you might want to try. Ask for your partner’s help. Remember that your partner may not want to do some things you want to try. Or, you may not want to try what your partner wants. You should respect each other’s comforts and discomforts, which helps you and your partner have a good sexual relationship. If you find it difficult to talk to your partner, your doctor or a counselor may be able to help you.
Adapted from American Family Physician, Vol 62, No 1 (July 1, 2000)
ALARM MODEL FOR THE ASSESSMENT OF SEXUAL FUNCTIONING
ALARM refers to assessment of the following: sexual Activities,Libido-desire, Arousal and orgasm, Resolution, and any Medical history relevant to sexual functioning.
The following sample questions can help facilitate a conversation between health professionals and cancer patients.
Activity (frequency of such current sexual activities as intercourse, kissing, and masturbation)
1. Prior to the appearance of any signs or symptoms of illness, how frequently were you engaging in intercourse (specific weekly or monthly estimate)?
2. On occasions other than when having intercourse (or an equivalent intimate activity), do you share other forms of physical affection with your partner, such as kissing or hugging (or both) on a daily basis?
3. In the recent past (in the last six months) have you masturbated? If so, estimate how often this has occurred (specific weekly or monthly estimate).
Libido-desire (desire for sexual activity and interest in initiating or responding to partner’s initiations of sexual activity)
1. Prior to the appearance of your illness, would you have described yourself as generally interested in having sex?
2. Considering your current regular sexual relationship, who usually initiates sexual activity?
3. You indicated that your current frequency for intercourse is _____ times per week or month. Would you prefer to have intercourse more often, less often, or at the current frequency?
Arousal & Orgasm (occurrence of erection-lubrication and ejaculation-vaginal contractions, accompanied by feelings of excitement)
1. When you are interested in having sexual activity with your partner or alone, do you have any difficulty in achieving an erection? Do you feel emotionally aroused?
2. If you experience erectile difficulty, when did this problem start? How often does it occur? Do certain particular circumstances trigger its occurrence (with partner only, for example)? What do you understand to be the cause of the difficulty?
3. During sexual activity either alone or with a partner, do you have any difficulty with ejaculation (coming “too soon” or only after an extended period of time)?
4. If you experience premature or delayed ejaculation, how long would you estimate that it takes, on average, to ejaculate after intensive stimulation begins?
1. When you are interested in engaging in sexual activity, do you notice that your genitals become moist?
2. If you are postmenopausal, have you noticed any change in vaginal lubrication during sexual activity since the menopause, and are you currently taking hormone replacement therapy?
3. If you experienced arousal deficit, do you experience any pain with intercourse? How long have you had problems with becoming aroused during sexual activity? Do some circumstances cause you to feel more arousal than at other times?
4. During sexual activity either alone or with a partner, can you experience a climax or orgasm?
5. If orgasm does not occur, are you bothered at all by its absence?
Resolution (feelings of tension release after sexual activity and satisfaction with current sexual life)
1. After intercourse or masturbation, do you feel that sexual tension has been released?
2. On a scale from 1 (it could not be worse) to 10 (it could not be better), how would you rate your current sexual life?
3. Do you have any feelings of discomfort or pain immediately after sexual activity?
4. If you experience difficulty in resolution, what problems do you have after sexual activity? How long have they been occurring? What is your understanding of their cause(s)?
Medical History Relevant to Sexuality
1. Current age and medical history: Have you had diabetes or hypertension?
2. Psychiatric history: In the past, have you had emotional difficulties for which you have sought treatment?
3. Substance abuse history: Do you consume alcohol or nonprescription drugs that may cause disruption of sexual activity or responses?
Source: Andersen BL. How cancer affects sexual functioning. Oncology (Williston Park). Jun 1990;4(6):81-88; discussion 92-84.
BELIEF & REALITY: COMMUNICATION ABOUT SEXUAL ISSUES AND CONCERNS IN PATIENTS
It can be helpful for patients and health care providers to know what each other is thinking. Both patients and providers may envision an ideal conversation (beliefs) that may be impeded by circumstance or other concerns (reality).
Patients’ Beliefs (the ideal outcome they might like to have)
» Yes, medical staff should have talked to me about sexual issues.
» It would help you understand that it is normal to feel like I did after the chemo and the operation.
» I could have understood why I was having sexual problems if they’d have said you might have problems sexually because we’ve removed this or that.
» It would have provided reassurance—a light at the end of the tunnel.
» You should know what’s going to happen instead of it hitting you like a ton of bricks.
Providers’ Beliefs (the ideal information or questions they might like to offer)
» Yes, we should discuss sexual issues with patients.
» The following sexual problems may occur and why.
» Reassurance that sexual activity will not cause a recurrence.
» Reassurance that sexual problems are normal.
» Advice or help is available.
Patients’ Reality (the undesirable outcome they may have experienced)
» No, medical staff didn’t talk to me about sexual issues.
» I didn’t know much about how sex would be affected…I just had to go through and find out for myself.
» You have no idea about how the cancer will affect you sexually.
» Nobody talks about sex, and you wonder whether it is right that you feel different.
» The doctor said that if I was having problems with sex, the hospital had creams to help me, but nothing else was said.
Providers’ Beliefs (the discomfort or uncertainties they may have realized)
» No, we don’t often discuss sexual issues with patients.
» It’s not my responsibility.
» Talking about sexual issues is embarrassing.
» I am not sure what types of sexual problems patients experience.
» I don’t feel confident talking to patients about sexual issues.
» I wait until a patient asks about sex.
» There’s no time to discuss sexual issues.
Source: Stead, M. L., J. M. Brown, et al. (2002). “Communication about sexual problems and sexual concerns in ovarian cancer: a qualitative study.” West J Med 176(1): 18-9.
Cancer.org: Sexuality for Women and Their Partners
Cancer.org: Sexuality for Men and Their Partners
1. Andersen BL. Sexual functioning morbidity among cancer survivors. Current status and future research directions. Cancer. Apr 15 1985;55(8):1835-1842.
2. World Health Organization. Working definitions of sexuality and sexual health: results of a WHO-convened meeting, “International Consultation on Sexual Dysfunctions”. http://www.who.int/reproductivehealth/gender/sexual_health.html. Accessed March 19, 2006.
3. Barton D, Wilwerding M, Carpenter L, Loprinzi C. Libido as part of sexuality in female cancer survivors. Oncol Nurs Forum. May 2004;31(3):599-609.
4. McKee AL, Jr., Schover LR. Sexuality rehabilitation. Cancer. Aug 15 2001;92(4 Suppl):1008-1012.
5. Knobf MT. The menopausal symptom experience in young mid-life women with breast cancer. Cancer Nurs. Jun 2001;24(3):201-210; quiz 210-201.
6. Schultz PN, Klein MJ, Beck ML, Stava C, Sellin RV. Breast cancer: relationship between menopausal symptoms, physiologic health effects of cancer treatment and physical constraints on quality of life in long-term survivors. J Clin Nurs. Feb 2005;14(2):204-211.
7. Young-McCaughan S. Sexual functioning in women with breast cancer after treatment with adjuvant therapy. Cancer Nurs. Aug 1996;19(4):308-319.
8. Barni S, Mondin R. Sexual dysfunction in treated breast cancer patients. Ann Oncol. Feb 1997;8(2):149-153.
9. Malinovszky KM, Cameron D, Douglas S, et al. Breast cancer patients’ experiences on endocrine therapy: monitoring with a checklist for patients on endocrine therapy (C-PET). Breast. Oct 2004;13(5):363-368.
10. Moyer A. Psychosocial outcomes of breast-conserving surgery versus mastectomy: a meta-analytic review. Health Psychol. May 1997;16(3):284-298.
11. Irwig L, Bennetts A. Quality of life after breast conservation or mastectomy: a systematic review. Aust N Z J Surg. Nov 1997;67(11):750-754.
12. Jonker-Pool G, Van de Wiel HB, Hoekstra HJ, et al. Sexual functioning after treatment for testicular cancer–review and meta-analysis of 36 empirical studies between 1975-2000. Arch Sex Behav. Feb 2001;30(1):55-74.
13. Frumovitz M, Sun CC, Schover LR, et al. Quality of life and sexual functioning in cervical cancer survivors. J Clin Oncol. Oct 20 2005;23(30):7428-7436.
14. Bergmark K, Avall-Lundqvist E, Dickman PW, Steineck G, Henningsohn L. Synergy between sexual abuse and cervical cancer in causing sexual dysfunction. J Sex Marital Ther. Oct-Dec 2005;31(5):361-383.
15. Andersen BL. How cancer affects sexual functioning. Oncology (Williston Park). Jun 1990;4(6):81-88; discussion 92-84.
16. Rajagopal A, Bruera ED. Improvement in sexual function after reduction of chronic high-dose opioid medication in a cancer survivor. Pain Med. Dec 2003;4(4):379-383.
17. Porzio G, Trapasso T, Martelli S, et al. Acupuncture in the treatment of menopause-related symptoms in women taking tamoxifen. Tumori. 2002;88(2):128-130.
18. Giesler RB, Given B, Given CW, et al. Improving the quality of life of patients with prostate carcinoma: a randomized trial testing the efficacy of a nurse-driven intervention. Cancer. Aug 15 2005;104(4):752-762.
19. Stead ML, Brown JM, Fallowfield L, Selby P. Communication about sexual problems and sexual concerns in ovarian cancer: a qualitative study. West J Med. Jan 2002;176(1):18-19.
20. Arlt W, Callies F, van Vlijmen JC, et al. Dehydroepiandrosterone replacement in women with adrenal insufficiency. N Engl J Med. Sep 30 1999;341(14):1013-1020.
21. Reiter WJ, Pycha A, Schatzl G, et al. Serum dehydroepiandrosterone sulfate concentrations in men with erectile dysfunction. Urology. May 2000;55(5):755-758.
22. Reiter WJ, Pycha A, Schatzl G, et al. Dehydroepiandrosterone in the treatment of erectile dysfunction: a prospective, double-blind, randomized, placebo-controlled study. Urology. Mar 1999;53(3):590-594; discussion 594-595.
23. Reiter WJ, Schatzl G, Mark I, Zeiner A, Pycha A, Marberger M. Dehydroepiandrosterone in the treatment of erectile dysfunction in patients with different organic etiologies. Urol Res. Aug 2001;29(4):278-281.
24. Buvat J. Androgen therapy with dehydroepiandrosterone. World J Urol. Nov 2003;21(5):346-355.
25. Kaaks R, Rinaldi S, Key TJ, et al. Postmenopausal serum androgens, oestrogens and breast cancer risk: the European prospective investigation into cancer and nutrition. Endocr Relat Cancer. Dec 2005;12(4):1071-1082.
26. Dahn JR, Penedo FJ, Molton I, Lopez L, Schneiderman N, Antoni MH. Physical activity and sexual functioning after radiotherapy for prostate cancer: beneficial effects for patients undergoing external beam radiotherapy. Urology. May 2005;65(5):953-958.
27. Phillips NA. Female sexual dysfunction: evaluation and treatment. Am Fam Physician. Jul 1 2000;62(1):127-136, 141-122.
28. Krishtal O, Lozovaya N, Fisunov A, et al. Modulation of ion channels in rat neurons by the constituents of Hypericum perforatum. Pharmacopsychiatry. Jul 2001;34 Suppl 1:S74-82.
29. Ebert T. Clinical experiences with testosterone therapy: prostate safety. Aging Male. Dec 2004;7(4):304-311.
30. Clayton DO, Shen WW. Psychotropic drug-induced sexual function disorders: diagnosis, incidence and management. Drug Saf. Oct 1998;19(4):299-312.
31. Stearns V, Hayes DF. Approach to menopausal symptoms in women with breast cancer. Curr Treat Options Oncol. Apr 2002;3(2):179-190.
32. Field T, Hernandez-Reif M, Diego M, Schanberg S, Kuhn C. Cortisol decreases and serotonin and dopamine increase following massage therapy. Int J Neurosci. Oct 2005;115(10):1397-1413.
33. Schover LR. Sexuality and Fertility after Cancer. Hoboken: Wiley; 1997.
34. Schroder M, Mell LK, Hurteau JA, et al. Clitoral therapy device for treatment of sexual dysfunction in irradiated cervical cancer patients. Int J Radiat Oncol Biol Phys. Mar 15 2005;61(4):1078-1086.
35. Holzbeierlein JM, Castle EP, Thrasher JB. Complications of androgen-deprivation therapy for prostate cancer. Clin Prostate Cancer. Dec 2003;2(3):147-152.
Commonly referred to as “chemo brain” or “chemo fog,” adverse effects in cognitive function are often experienced by patients going through various cancer treatments. This issue is frequently a topic in cancer support group meetings1 and has been investigated in clinical studies where it is variously referred to as “chemotherapy-related cognitive dysfunction,” “cognitive deficit,” or “cognitive decline.”2 Changes in cognitive ability because of chemotherapy treatment may be a type of autoimmune response or the result of chemical toxicity, oxidative damage, or inflammation in neurons.3
Eighty percent of the information a doctor relies on to make an accurate diagnosis and develop a treatment plan comes from the information in your medical records. Unfortunately, important records and other health information is often incorrect, incomplete, or simply unavailable. The more you get involved in all aspects of your health care – including collecting and understanding your own medical records – the better off you will be.
Uncontrolled pain is one of the most feared consequences of cancer or its treatment. Therefore, meticulous pain management is essential for the quality of life of many people living with cancer. Integrative pain management techniques can improve pain control while minimizing unwanted side effects.
For the past 25 years, Americans have been sleeping less and less each night. In surveys conducted by the National Sleep Foundation, up to 69% of adults report having sleep problems on a few nights a week or more. Insomnia is, by far, the most common sleep disorder in the United States, affecting nearly 70 million of us; 35% of survey respondents had insomnia every night and nearly 60% reported insomnia at least a few nights per week.
It is a choice no one should have to make: pay rent and buy food or get prescriptions filled. Yet all to often, it is a choice many Americans have to make.
Over 40 million Americans have no health insurance and millions more have limited coverage. Many Americans just can’t afford health care, and if they can, they still don’t have the money to pay for their medicines.
PATIENT ASSISTANCE PROGRAMS
There is help available for many people who can’t afford their medicines. These programs, frequently called patient assistance programs (PAPs), are designed to help those in need obtain their medicines at no cost or very low cost.
Many pharmaceutical companies have PAPs. The manufacturers who have these programs do so for various reasons: Some believe that they have a corporate social obligation to help those who can’t afford their products while others believe PAPs are a good marketing tool. As one PAP director once told me, many people who can’t afford their medicines eventually go on to obtain some type of coverage. And when they get this coverage, the companies want the patient to continue using their products.
In 2002, PAPs helped over 5 million people. The programs filled 14.1 million prescriptions with a total wholesale value of over $2.3 billion.
THE BASICS OF THE PROGRAMS
All PAPs are designed to help those in need obtain their medicines. Since each pharmaceutical company establishes its own rules and guidelines, all are different. All have income guidelines, but these vary considerably. Each company selects which drugs are available on their programs and how long a person can receive assistance.
HOW PAPS WORK
Although no two programs are exactly the same, most require that the patient complete an application form.The amount of information required varies. Some programs require detailed medical and financial information, others very little. All require a doctor’s signature and some programs require the doctor complete a portion of the application.
Most send the medicines to the doctor’s office for distribution to patients, while others send the medicine to a pharmacy. A few send a certificate that the patient gives directly to their pharmacist. Some patients need drugs for a long time and most, but not all, programs that cover medicines used to treat chronic diseases offer refills.
WHAT MEDICINES ARE COVERED
The pharmaceutical companies decide if they will have a PAP and, if they do, which of their medicines are available through the program and at what dosages. Some include many or all of the medicines they make, while others include only a few. Sometimes different dosages of a certain medication will be available at various times. The reasons for their decisions are not something they make public. None include generic medicines in their programs.
HOW TO LEARN ABOUT PAPS
As your doctor or pharmacist may not know about PAPs, the best place for information is the Internet. There are a number of sites that have information on these programs. Many pharmaceutical company websites also have information about their patient assistant programs on their websites, but often this information is buried and difficult to locate.
TYPES OF WEBSITES
There are many websites with information on patient assistance programs, including NeedyMeds.com, RxAssist.org, and HelpingPatients.org. There is no charge to access the information and these sites don’t have a PAP of their own nor do they help individuals apply to get their medicines.
NeedyMeds, a website I co-founded, is self-funded by sales of manuals and other items.The Robert Wood Johnson Foundation supports RxAssist. The Pharmaceutical Research and Manufacturers of America (PhRMA), an association and lobbying group whose members include many of the larger pharmaceutical manufacturers, runs HelpingPatients.org; it only has information on PhRMA members programs.
There are also a number of sites that charge to help people learn about patient assistance programs and complete the application forms. The charges vary as does the quality of the services provided. Some offer a money-back guarantee if they can’t get your medicines.
HOW TO USE NEEDYMEDS
I will describe how to use the NeedyMeds site as it is the one I know most about. RxAssist and HelpingPatients contain similar information.
There are two ways you can check to see if your medicines are available on a patient assistance program.One is to click on the drug list, which brings up an alphabetical list of all the drugs currently on PAPs. Find the medicine you take and click on its name to bring up the program page. You can also search by drug manufacturer.
On the program page,you will learn about the specifics of the PAP, including the qualification guidelines, the application process, the information you need to supply, and what your doctor must complete. In addition, you will learn if there is a downloadable application on the website or if you must get an application from the company. (Some companies accept copies of their application form while others require you complete an original.)
Once you get the information you need, it is then up to you to complete the applications, get the necessary signatures, and send the form to the program.
A FEW TIPS
The most common problem patients encounter when completing the application forms is the lack of physician cooperation. Patients often complain that their physicians refuse to complete the forms or charge to do it. If you run into this situation, here are a couple of suggestions:
1. Make sure you have completed everything on the form you can. Not only should you complete the applicant’s section, but anything else you can do. This may include the physician’s name, address, and phone number.
2. Bring all the information your doctor may need. For example, some programs require proof of income. If so, attach whatever documents are required.
3. Bring an addressed envelope with the appropriate postage.
4. Don’t expect your doctor to complete the form immediately. A busy doctor may not have time to read the form while you are in the office.
5. If you encounter resistance, tell your doctor that without his or her help, you won’t be able to obtain the medicines you need. Be blunt.
6. If all else fails, you may need to find a physician more sympathetic to your situation and willing to help you.
WHAT IF I DON’T HAVE A COMPUTER
Many people without a computer can still use the information available on these websites. Nearly everyone knows someone with a computer – a family member, a neighbor, or a friend. Most public libraries have computers for public use and people who can help those not familiar with their use.
Patient assistance programs are not the best solution to the problem of the high cost of medication. However, it is the best solution for some people. Millions of people use PAPs to get the medicines they need but can’t afford. If you can’t afford your medicines, a patient assistance program may be able to help you.
Richard J. Sagall, MD, is a board certified family physician practicing in the Philadelphia area. He co-founded NeedyMeds.com and continues to run the site, where he can be reached via email.
In the last Avenues, we wrote about strategies patients can use to improve communication with their doctors. In this article, the third in our Becoming Your Own Advocate series, we discuss the issue of letting your physician know about your use of complementary and alternative medicines, why it’s important for them to be informed, and how to communicate this to them effectively.
Treatment results improve when doctors and patients collaborate in medical decision-making. Such was the conclusion of Dr. Jane Harrington, of University College London in a January 2004 meta-analysis.1 Dr. Harrington critically examined 25 papers that studied how improving the quality of doctor-patient communications affected patients’ level of satisfaction with their care and their response to treatment. In each of these studies, patients were provided with sample questions to ask their doctor, informative essays or brochures, or videotaped examples of communication techniques to use as preparation for a doctor’s appointment. In most of these studies, efforts to help patients more effectively communicate with their doctors resulted in increased patient satisfaction, an increase in the amount of questions asked and information received, an increased feeling of control over one’s health, better compliance with treatment recommendations, and better overall health outcomes.With all the emphasis on technology in today’s medicine, it is encouraging to note that quality human interaction can still influence the effectiveness of medical care. In this article, the second in our Becoming Your Own Advocate series, we present suggestions to help enhance preparation for medical consultations and offer some specific questions to ask your doctor. We also include findings from recent research that may help dispel common myths about the clinical encounter and the ways in which doctors and patients truly interact.
Science is a work in progress. Every day, promising studies are released and new treatments are approved. But how can you evaluate whether the information you’re reading is relevant to your own health or to that of a patient, friend, or family member?